FIVE

It is hard to believe that my daughter would be turning five this year if she had been born alive. How did I survive five whole years with this ache inside my chest? I wonder who she would be today. Would she be reading super early like her brothers or would she show no interest in letters like her sister? Would she be doing gymnastics like I was at five? Would she have curly hair like Nora? Would Lucy be stubborn and independent like I was as a kid? Or would she be a rule follower like her Daddy? Would she be a tomboy or would she prefer Barbies? I wonder what her voice sounds like. I wonder who her little friends would be. Oh I miss my baby so much.

I’ve been telling Nora about her big sister lately and she accepts it all as completely normal, like everyone has a sister in heaven. The other day I got my Lucy box down and let Nora look through it. She loved seeing her sister’s pillow, dress, hat, blanket, pictures and even the many cards we have saved from our friends and family.

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I know that right now Nora doesn’t really understand what it means to lose a sister, but one day when she is older she will grieve the loss of that special relationship. There is still so much heartache to come.

Over the past couple of weeks I’ve been reading back in my journal from the days leading up to Lucy’s death. I can tell from the buoyancy of my writing that I was a different person then. Cheerful and optimistic. Sure that God would save her if I had enough faith. Then at the end of my 17th week of pregnancy (or possibly 18th week since they changed her due date a couple times) I wrote:

My baby might die tomorrow. She has to have an intrauterine blood transfusion at 17 weeks 6 days. I sobbed in the shower tonight crying out to God for her life. “I want to keep her! I want to keep her!” I cried over and over again. God said, “Whatever happens, you have her for eternity. You have her for eternity. Trust me.” And these thoughts have calmed my spirit and given me peace:

*I have her for eternity.

*I will give her life for God’s glory if He asks.

*She is HIS anyway.

*Abraham gave his son to God. God gave His Son for us. I will hold my daughter’s life with an open hand.

*My life’s purpose is to glorify God, not to keep my daughter.

*He will sustain me.

*I will be strong and courageous.

I remember how desperately I cried out to God that night, begging Him to let me keep Lucy. I think I knew then that God was not going to save her. Even though she survived the IUT the following day, she died eight days later while we watched on ultrasound. But that night when I begged for her life I sensed God asking me to place her in his arms. I look at those truths I wrote down five years ago and they give me courage to continue trusting God with this great loss. They give me courage to face the future without her. All of the days to come, without my sweet girl. I can do this, no matter how much I hate it. If I could be brave enough then to give my girl back to God, I can be brave today too. Because the truth is, it still takes an incredible amount of might to live each day without my child. It takes courage and grit and forgiveness and a whole lot of energy.

Three days before Lucy died I wrote this quote down by Charles Spurgeon:

Don’t you know that day dawns after night, showers displace drought, and spring and summer follow winter? Then, have hope! Hope forever, for God will not fail you.

Hope forever. As the days and the weeks and the years pass, more and more light slowly emerges. The dawn after our night. Today I can feel joy and contentment and I can sing again and I laugh freely most of the time. I go days and sometimes weeks without crying. None of these things seemed possible five years ago when I watched my baby’s heart stop and my world splintered. But God has been true to His word. When He promised me five years ago on that rainy, dreary day in that horrible hospital room, “I WILL REDEEM IT” He was telling the truth. He has been persistent in His quest to redeem the many things that died on February 8th, 2013 along with Lucy. And one day when I arrive in heaven, He will redeem the loss of my daughter and all of the missed moments with her here on earth. Yes, I will hope forever, for God will not fail me.

Three days after Lucy died when I was at one of the lowest points of my life I wrote this simple journal entry:

I TRUST HIM.

I trust you, Lord. Show me your goodness. Show me your hope. Show me what you are going to do with this sacrifice of pain and loss. Make her little life worth something….something so beautiful.

I TRUST YOU.

And now I get to show you the goodness and the hope, the beautiful thing God is doing with Lucy’s life. Because of my experience with her and because of this blog, I get to connect with parents from all over the world who are dealing with a sensitized pregnancy and help them advocate for the right care. You know, I invest in each one of my children’s lives daily; Liam, Asher, Nora and Callum. I don’t get to invest in Lucy’s life, so instead, I invest the time I would be spending with Lucy in these babies and their parents. My Facebook feed is full of pregnant bellies and ultrasound updates and newborn babies and pregnancy announcements…all the things that used to trigger my PTSD and send me spiraling. Now they are some of my greatest joys in life. Here are some of the beautiful babies who were impacted by Lucy and me over the past year. (There were so many babies that I couldn’t include each one’s story so I just included a couple and then the names and pictures of the rest of them.)

 “My Kell baby Nancy, nearly 6 months old. She wouldn’t be here now if it wasn’t for your blog and the invaluable help of the ISO moms group. The knowledge I gained from you helped me to ensure she had the best care, if I hadn’t fought so hard for more regular MCA scans she would have been so anaemic we would’ve lost her. I’m eternally grateful. Thinking of you and your precious Lucy xxx ❤️”

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“After a shocking loss of our daughter in 2016 I was told I should never get pregnant again because my antibodies would cause another loss. Long story short, I found Bethany’s blog and the ISO group which gave me hope again for future children. My rainbow baby Cameron was born this past summer and words can not describe how grateful I am for Bethany sharing Lucy’s story. If it wasn’t for her my son would not be here today. ❤️”
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Isaiah

Gabriella Grace

Sloan

Alexander

Cole

Emmett

Maxwell Raymond “Bay”

Halle Ann 

Nate

Timothy James

Baby M

Olivia

Crosby

Sawyer

Freddy and Max (and baby on the way)

Grace

Sylvie

Baby G

Ava Irene

Benjamin

Baby P

Baby H

Bennett

Oliver

Baby T

Sadie-Mae

Boone

Max

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Callum Joseph Thomasimg_9053

And for the babies who are not pictured here, but who are just as important as the ones who survived, you are greatly missed and deeply loved. The ones who don’t come home from the hospital in their mamas’ arms, like Nancy Stella and Freya Louise and Connor James and all of the precious babies who were lost, these babies often have a greater impact on my life than the ones who lived. I feel great comfort knowing Lucy has such amazing little friends in heaven with her.

Happy birthday in heaven, Lucy Dair. I ache for you every day. I see all the empty spaces where you should be. Five years closer to having you forever. I love you and I’m so proud to be your mommy.

 

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UAB MFMs and Isoimmunization

I have had this blog post mostly written and sitting in my draft folder for months now, waiting to be published. It weighs on me and I think about it often, rewriting certain sentences in my mind, adding and editing mentally while I go about my tasks during the day. Mostly, I want the whole post to be saturated with forgiveness and grace, but also truth. The doctors I write about are real people, and I don’t want to attack their character or publicly shame them for mistakes they made. What if blog posts were written about me every time I made a mistake? What if I had a job where my actions had life or death consequences? That would be so difficult. And these doctors have done some truly wonderful things for me, like the amniocentesis and pushing the insurance company to cover treatments during my pregnancy with Nora (before transferring to Dr. Moise.) But truth is incredibly important and I feel deep in my heart that lives could be at risk if I don’t share the truth. I feel a heavy responsibility to protect families from experiencing what our family has experienced. I have forgiven the doctors at UAB for their mistakes. I forgive them over and over again when my heart breaks yet again for my girl and I forgive them again when I run through the events leading up to her death for the hundredth time. The one person I struggle to forgive the most is myself. As a mother it is my job to protect my children and I feel like I failed Lucy in the worst way, even though I really did try my best at the time to save her. I just didn’t understand the disorder enough back then. I was confused and scared and scrambling around grasping for information about anti-Kell antibodies (which was very hard to find.) I didn’t know the treatment options available or the proper monitoring protocols. I thought I could trust my MFM specialists to know all of these things and I placed my daughter’s life in their hands. There was so much I didn’t know when I was pregnant with Lucy in 2013. But I know now, and I cannot quietly sit by and leave other babies to Lucy’s fate. Hopefully I can spread the word and get the right information out there to protect families in Alabama dealing with isoimmunization/alloimmunization.

A couple of weeks before I gave birth to Callum I finally had my follow up appointment with the MFMs at UAB hospital to discuss what happened with Lucy. After Lucy was stillborn, I scheduled a preconception appointment at UAB to discuss everything that happened during the pregnancy and her autopsy results, placenta analysis and blood work results. One of the head MFMs called me a few weeks after Lucy died and said he thought I had had a fetal maternal hemorrhage and that was the reason we lost Lucy, not just the anti-Kell antibodies. He said there was no reason for me to have the follow up appointment and he encouraged me to cancel it. I was ecstatic that my antibodies weren’t necessarily to blame for Lucy’s death (supposedly) and I canceled the appointment like he suggested. This meant that I never got to discuss what happened during my pregnancy with Lucy or go over the decisions that the MFMs made. No one was held accountable. I had no idea if they learned anything from my experience. It haunted me over the years and the questions I had for the doctors just bounced around in my brain that whole time, unanswered.

UAB is good at many things, and even the MFMs at UAB might be great at treating common pregnancy complications. But when it comes to isoimmunization their protocols are out of date, possibly putting unborn babies at risk. They start MCA scans (the special ultrasound that checks baby for anemia) at around 22-24 weeks even when the woman has a critical titer. This was their plan for Lucy, even though my Kell titer was 1,024 (critical titer is 8.) I asked them many times during my pregnancy to do an MCA scan to make sure Lucy wasn’t anemic. They refused over and over again. It is a non-invasive, quick ultrasound and it is the only way (besides doing an amniocentesis) to check the baby for anemia. Even while they were doing a level II ultrasound at 16 weeks, spending an hour with the ultrasound wand on my belly, when I asked them to please do the MCA scan to see if she was anemic they wouldn’t do it and they missed the anemia that day because of it. The day after I gave birth to my lifeless daughter, I asked Dr. O if they would change their protocols and start scanning women with critical titers sooner now because they saw what happened to Lucy. He said, “We don’t change protocols just because of one baby.” Naively, I still thought that surely they would have learned to be more cautious when treating other isoimmunized women because of what happened with Lucy. That was one of the only thoughts that gave me comfort after Lucy died. Maybe other babies would be saved because of Lucy. But about a year or two ago I was contacted by another Kell mama in Alabama, and I encouraged and helped her through her pregnancy. To my horror, even though her titer was well over critical, the MFMs at UAB told her she would have her first MCA scan sometime between 20-24 weeks. It was apparent from her experiences with them that they had changed nothing after losing Lucy. After realizing that, I knew I had to meet with them to discuss everything that happened with Lucy and urge them to treat this disorder more seriously. If they had updated their protocols and treatment options after Lucy died, I would not have felt compelled to have this meeting with them. By the way, women with critical titers are supposed to have their first MCA scan between 16-18 weeks to make sure the fetal anemia is caught in time to treat.

So, I met with the head of the MFM department, Dr. D and one of the main MFMs who handled my pregnancy with Lucy (Dr. O) a couple weeks before giving birth to Callum. I really appreciated them agreeing to this appointment since it had been over four years since Lucy died. I can only imagine how many patients they had treated in the previous four years, so I’m actually surprised that they remembered anything from my pregnancy (and maybe they couldn’t remember everything which is why some responses were so vague?)

I know it must have seemed strange to them that I would want to come in four and a half years after losing my baby to discuss what happened. They were polite and respectful and I know it was probably hard to do that during this conversation. The one thing I appreciate most is that Dr. O referred to my daughter as Lucy. He didn’t call her “the baby” or “fetus” he called her Lucy and that meant the world to me. I wish other people in my life would just call her Lucy and say her name like they say my other children’s names. It was unexpectedly refreshing and I appreciate him doing that for me.

Unfortunately, I left the appointment feeling discouraged, disappointed and depressed, but also more determined than ever to keep fighting for babies like Lucy, Nora and Callum. Where do I even start? The doctors did not take any responsibility for what happened to Lucy. Many of my questions were not answered in the way I hoped they would be; some weren’t answered at all. I was hoping that the doctors had actual medical reasons for the choices they made regarding my treatment. I think that would have given me some peace. For example, when I asked, “Why did you wait a whole week to scan Lucy after the IUT, especially since her hematocrit was 6?” Pause….”Well, that’s just what we do.” Another example, “When I didn’t feel Lucy move again after the IUT and I came into labor and delivery a few days later, why wouldn’t you do an MCA scan to check her for anemia even though I asked over and over again for one? Why was I sent home? She was dying.” They said something about MCA scans possibly being inaccurate after an IUT, but they didn’t know why I was sent home. They just didn’t have an answer. If they had listened when I insisted something wasn’t right and she wasn’t moving, and checked her anemia levels then they possibly could have saved her.

When I asked, “In the past four years since Lucy died, what has UAB done to ensure that this doesn’t happen to another baby?” they couldn’t tell me. I was given a vague response about how what happened to Lucy was very rare and most women don’t have a titer as high as mine. I talked about how when I came back with my second Kell pregnancy, the MFM told me I should just hope that the baby was Kell negative and to come back at 16 weeks for an amniocentesis. I showed them a picture of Nora and said that if I had trusted their expertise and gone with their treatment plan, she would be dead today. They had nothing to say, except, “Well, maybe she would have survived without the plasmapheresis and IVIG? We don’t know for sure.” “But you were willing to take that risk with my daughter’s life, even after seeing what happened with Lucy?” Silence.

Both doctors remained determined to stick with their MCA start time of about 22 weeks for women with critical titers. I tried explaining that a lot of babies would not be alive by 22 weeks if they waited that long before being checked for anemia, but they disagreed. They said there are no specific guidelines set by the ACOG saying when doctors HAVE to start MCA scans so they usually go case by case and decide when to scan based on each specific woman and her history. I explained that this is exactly what terrifies me since with my specific case, they saw that I had a Kell titer of 1,024 and decided that the best course of action would be to start scans around 22 weeks. One doctor spoke up, “Well we have learned since treating you that sometimes even in first sensitized pregnancies, babies can be affected earlier than 22 weeks if the titer is very high and the woman has anti-Kell.” So I asked him if a woman came in today with my exact situation, (first sensitized pregnancy, anti-Kell titer of 1:1,024) what would the treatment plan look like? The doctor said they would not suggest plasmapheresis and IVIG (the treatments that saved Nora and Callum’s lives) but “now, we would suggest starting MCA scans as early as 18-20 weeks.” This is the most ridiculous thing since Lucy died because they caught the anemia too late, even with a scan (that I forced them to do) at 18 weeks.

I won’t go through all of  my specific questions and their answers. I think the most unsettling thing about the whole appointment was how nonchalant they seemed about it all. I tried to convey, somehow, with my inadequate words how important Lucy was to us, and how their choices had impacted our family forever. I told them I would have rather died than have to live without her. I would have gladly taken her place if I had been given the chance. How could I explain how precious my baby girl is to me? I just sobbed. My mom told them that people trust UAB, we trusted UAB with our baby, and they need to take that responsibility seriously. I told them they had so many chances to save Lucy and they let her down over and over again. They said nothing. No apology, no promise to protect other babies, no real change. I’m guessing they decided beforehand not to admit to any wrongdoing during our conversation and they clung to that fiercely.

When I said it seems like UAB tries to do the least amount of monitoring possible, instead of being extra cautious with these little lives, they did not deny it. When I said, “Many women ask me for MFM recommendations in Alabama. Some ask specifically if I could recommend UAB. I always wish that I could recommend UAB but as far as I know, I can’t because I don’t think their babies would be safe here. When they ask me if they should go to UAB for treatment, what should I tell them?” Silence…and a shrug of the shoulders. Right at the end of the appointment when we were getting up to leave, Dr. O did say that Lucy was important to them and she had affected them in some ways. He just couldn’t tell me how they have improved and I haven’t seen any evidence of that. One thing he did agreed to do was scan a woman with a critical titer before 22 weeks if she specifically asked for and insisted on the MCA scan. But how is a woman supposed to know she has to request this type of scan in order for her baby to receive the right monitoring? The MFMs are the ones who should be providing the right care even if a mother doesn’t insist on the specific tests by name. I told them that many hospitals all over the world start MCA scans by 18 weeks for women with critical titers. Dr. O asked which ones but I didn’t have the names of the actual hospitals on hand. He said if I gave him a list of other hospitals and practices that start MCA scans by 18 weeks then he would consider changing their policy. I promised him that I would.

I went in to this appointment giving these MFMs the benefit of the doubt. I was hopeful that maybe I had just projected my grief of losing my daughter onto them and that is why I thought they had given us such inadequate care, but they only confirmed what I had thought. They do treat isoimmunization with nonchalance and they are resistant to change, even if it means babies might die.

Here is my warning: If you are pregnant and you live in Alabama and you found out that you have tested positive for anti-Kell antibodies, or anti-D antibodies, anti-c, anti-E, anti-jka, etc. do not trust UAB to protect your baby’s life. From my experience and my observations, I can only conclude that they will not provide adequate monitoring or treatment and your child will be in danger under their care.

You will need to find another MFM out of state to give you the proper care (since there are no other MFMs in the entire state of Alabama.) Dr. Trevett in Atlanta is amazing and so is Dr. Moise in Houston. Those are my two recommendations if you want phenomenal care for you and your child. My OB here in Tuscaloosa will now be referring any of his “ISO moms” who come up with a positive antibody screen to Dr. Trevett in Atlanta, bypassing UAB altogether. It is so worth the drive. I’m sure there are also other MFMs out of state who know how to properly treat isoimmunization/alloimmunization.

It sounds ridiculously dramatic, but as I left that appointment at UAB, I had the very real sense that I was walking out of a dangerous place, and I wanted to run to get away. I placed my hands on my swollen belly with my healthy kicking baby boy inside and thanked God that my son was safe. I left that appointment in awe of Dr. Trevett and Dr. Moise, wishing I could hug them and express my deep gratitude for them. I think that was the moment that I knew Callum’s middle names would be Joseph, after Dr. Moise and Thomas, after Dr. Trevett. They respect the trust that we put in them to protect our children. They take every step possible to provide the best monitoring and treatment for their patients. They truly care about our babies. I am so glad I left Alabama for Nora and Callum, and I am devastated all over again that I stayed at UAB with my precious Lucy. I just had no idea. What I would give to reverse time and leave the state for better care during my pregnancy with Lucy.

A couple of months after my appointment at UAB, I sent Dr. D and Dr. O a list of 57 different hospitals and medical practices around the world that start MCA scans by 18 weeks, including a real life example of a woman treated at each hospital. I included the patient’s initials, her antibody, her titer and when they performed her first MCA scan. Dr. D replied,

“Thank you for your continued interest and info. We are in the process of rewriting our guidelines and plan to evaluate MCA doppler in the second trimester (16 -18 weeks) in appropriate patients. I’ll let you know our final pathway.”

This felt very promising! I still have not heard back from them, but if they decide to update their protocols I will definitely come back and update this blog post with their improvements. Until then, I strongly urge you to skip UAB hospital if you are dealing with isoimmunization during pregnancy and find an MFM who will treat your pregnancy with caution and expertise.

One last thought: When I left my appointment I felt so incredibly defeated. My grief over my daughter’s death just swamped me like a big wave. It felt like she meant nothing to them, like her life was worthless. It gutted me all over again to think that her death was preventable if only I had known then what I know now. And the fact that the people who should have saved her but didn’t, had just denied their role in her death made it hurt even worse. But that morning before my appointment my mom had shared this verse with me-

Lamentations 3:57-59 You came near when I called on you; you said, “Do not fear!” You have taken up my cause, O Lord, you have redeemed my life. You have seen the wrong done to me, O Lord; judge my cause.

And that verse came to mind as I drove away from UAB hospital. None of this was out of God’s control. UAB might have failed my daughter but God did not. Even though I can’t trust UAB, I can absolutely trust God. And even if my daughter’s worth was lost on those doctors, she was intricately woven together by the Creator of the universe and He treasures her. God desperately loves Lucy even more than I love her and that gives me peace. And the injustice done to Lucy and me? God sees the wrong done to us and He will judge our cause. I cannot force them to see Lucy’s worth or to be accountable for their actions but I can hopefully protect other babies in Alabama from experiencing what I went through.

All Clear

Well, we went in for Callum’s seventh blood transfusion on the Friday before Thanksgiving and ended up leaving the hospital without one! When we arrived that morning for the transfusion they inserted his IV and had his blood drawn to check his levels and we were happy to find out that his levels had gone up just a little bit on their own! His hematocrit and hemoglobin the Monday before had been 25.7 and 9.1 and on Friday they were 26.6 and 9.3. It was the first time in his life that he had brought his counts up without a blood transfusion so we were elated.

His hematologist checked his blood for my antibodies and it came back completely negative! I was surprised by how emotional I felt when he told me Callum’s antibody screen was negative. My baby was finally free from my dangerous antibodies for the first time in his life. He can now make his own blood and it won’t ever be destroyed by my antibodies again. It has been a long hard road to get my boy to safety. We did it! They removed his IV and sent us home without a transfusion.

We came back a few days later to check his counts one more time right before Thanksgiving and his numbers had BARELY gone up. His hemoglobin was the same (9.3) but his hematocrit had gone up from 26.6 to 27 so we were cleared to leave the state and visit family in South Carolina for Thanksgiving. We had such a great Thanksgiving with everybody. Callum’s Grandparents got to hold him for the first time and his SC aunts and uncles got to hold him for the first time without monitors and wires attached to him.

Yesterday I drove the hour to Children’s of Alabama for the last time to have Callum’s blood checked by the hematologist. His levels had gone up again on their own! His hematocrit was up from 27 to 28.4 and his hemoglobin was up from 9.3 to 9.6. We were officially released from hematology and we never have to check his counts again!! Thank you God, for this amazing gift.

Driving home from the hospital for the last time with my healthy boy in his car seat was redemptive and beautiful but bittersweet. This is how Lucy’s story should have ended. If she had been given the right monitoring and treatment like Nora and Callum, then I would have driven home one day in 2013 with my healthy baby girl in her car seat and our lives would have been completely different. Our family would be intact, our hearts would not be irreparably broken. Nora would grow up with a sister. Liam and Asher’s childhoods would not be marred by this tragedy. So many shoulds and woulds, and though I rejoiced that we were done, my grief noose tightened just a bit as I drove home with my healthy rainbow boy. But I also think about the other babies who might not be alive if it weren’t for Lucy and this blog. How many other lives would be devastated by tragedy if Lucy had lived? I’m reminded of a song I heard one day while driving to Atlanta for an ultrasound. It’s by Judah and the Lion and the lyrics bring me to tears every time I hear it.

And I’d take it all back, take it all back, take it all back just to have you.

Just typing the words makes me tear up. The words surge all the way down into this deep part of my soul, the part that still desperately wants to save my daughter. I think about the question, “Would I take it all back just to have my baby Lucy?” My mother heart would do anything to have my daughter back, to keep her alive. I would take it all back just to have her. But I also know that I couldn’t possibly make that choice knowing now what her life and her death have meant for other families. I am comforted knowing that God is in control of every little detail of my life and Lucy’s life and I don’t have to make these impossible, hypothetical decisions. But I still feel a deep ache knowing that Lucy’s story could have ended like Callum’s and the treatment that could have saved her was out there all along. Even with such angst in my heart about what happened to Lucy, I am flooded with relief and joy and gratitude knowing that Callum’s story will end differently.

Up Next Week: 3rd IUT and a Big Appointment

I had my 36th ultrasound yesterday to check on baby one last time before the IUT on Monday and to check his weight. The weight estimate is very important because the doctors use it to decide how much sedative/paralytic to give the baby before the procedure, and how much donor blood to give him during the transfusion. As usual, he’s measuring ahead (which we love!) and weighed 4lbs 10 oz at 31 weeks 6 days. I think that is about the average weight of a 34 week baby. The bigger he is, the easier the transfusion is for Dr. Trevett and the better off baby will be when he is delivered early. There were no signs of hydrops or distress during the ultrasound but baby was definitely the stillest he’s ever been and his MoMs ranged from 1.5-1.72 so that made me anxious. They drew my blood for the normal pre-IUT blood work and then I was on my way home to Alabama, just barely missing Atlanta rush hour traffic. About and hour later I got a call from the hospital. They told me I needed to turn around and come back because they had just received my blood results and there was a problem. It looked like I had developed another antibody, possibly the Le(a) antibody, which I know absolutely nothing about. They needed to draw more blood and do more tests to clarify what was going on. So, I turned back around, drove back to the hospital and had my blood drawn again. I won’t know more about this until Monday but I’m hoping that I didn’t really develop another antibody. The reason they do blood work before every IUT is because they have to check to make sure I haven’t developed any new antibodies. They have to carefully match the donor blood to my blood before every IUT because if they accidentally gave the baby blood that doesn’t match my antibodies, my body could destroy the baby’s blood right after they give it to him. Anyway, it was a long day and I’m thankful to be home with a day to relax with my family. Well, you know, do dishes, cook meals, do four loads of laundry, pack for Atlanta, clean the house, diffuse one thousand toddler melt downs and all of the other things a “relaxing” day with three young children entails. Tomorrow, my mom, Nora and I will drive back to Atlanta and stay through Tuesday for the IUT. Please pray that the baby is safe until then and that the procedure goes well. It’s stressful to feel his kicks slow down as he gets more anemic every day leading up to the IUT. Here’s our sweet boy during yesterday’s ultrasound-

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I also would love for you to pray for a very important appointment I have coming up next week. The appointment actually doesn’t involve my current pregnancy. It is about Lucy. I’ve been wanting to make this appointment for about four years now and I finally worked up the courage a few weeks ago to schedule it. The date has crept up on me and now it’s just a few days away, August 30th. Even though I’ve been wanting and needing to have this appointment since Lucy died, I’ve also been dreading it.

The appointment is at UAB Hospital (in Birmingham) with the head of the MFM department to discuss everything that happened with Lucy. We will also go over all of the test results that I never saw like her autopsy, my placenta analysis, amnio results, etc. I have a lot of questions that I’ve never been able to ask since I never had this appointment after Lucy died. Usually, after a baby is stillborn the doctors set up a “preconception appointment” for several weeks later to discuss what happened with the baby and to go over any test results and questions the parents might have. They also discuss future pregnancies and what the treatment or monitoring would look like if the parents did want to try for another baby (thankfully we won’t be discussing that.) I had scheduled my preconception appointment at UAB after Lucy died, but one of the main MFMs called me about a month after we lost her and told me I could cancel the appointment. He said he had seen my placenta analysis report and decided that I had had a fetal maternal hemorrhage which caused Lucy’s death (other doctors disagree.) He thought we could go on to have another baby naturally so he decided there was no need to have my preconception appointment. I was so overjoyed by this news that I cancelled my preconception appointment, which I now know was a really bad decision. I never got to ask the MFMs about the treatment and lack of monitoring I received during my pregnancy with Lucy (that contributed to her death.) I never saw her autopsy results, or any of the test results or anything. As far as I know, no one was held accountable for what happened or was even notified that a baby had slipped through the cracks left gaping by their hospital’s outdated protocols. I never got to ask them why they “don’t change protocol just because of one baby.” I am curious to know how many babies need to die before they decide that their protocols might need to be updated. Now I just sound bitter, which is not what I want. I hope to get some answers, to better understand the decisions the doctors made, to forgive the mistakes that were made and to make sure that this doesn’t happen to any other babies in Alabama.

Preparing for this appointment and writing down my questions has been emotionally difficult to say the least, but I feel like I have to have this appointment to get a little bit of closure regarding my experience at UAB. I am dreading the thought of going over her autopsy, thinking about my precious baby being cut open. How can a mother bear those thoughts? But the weight and responsibility of protecting other babies whose mothers go to UAB for treatment weighs heavily on me. Nora and this baby boy on the way are my daily reminders of how Lucy’s story could have played out if only she had received the right treatment and monitoring. Please pray that God gives me the strength to get through this appointment and find some peace afterwards. Also pray that the MFM department is humble enough to learn from Lucy and that they change their protocols regarding management of isoimmunized pregnancies.

Anti-Kell Antibodies: The worst mistake you can make.

Disclaimer: I am not a medical professional. This is what I have learned about this complication over the past few years through my experiences, through the wisdom shared in the Iso Moms group and through my research.

I still remember hearing the words, “There’s a problem with your blood work.” It was my first ultrasound and first OB appointment with my third child. I was nine weeks along. I had had no complications with my first two pregnancies so I was not prepared to hear those words. We had just seen baby Lucy on the ultrasound for the first time and everything looked perfect so I thought we were in the clear. I couldn’t really understand how my first trimester blood test results (taken at six weeks) could possibly cause any problems for the baby. The expression on my OB’s face made my heart sink, though. He sat down and tried his best to explain anti-kell antibodies to me but I didn’t understand everything he told me. He had been in the field for almost thirty years and I was his first patient with anti-kell antibodies.

It is so scary to suddenly be told that your pregnancy is “high risk” and your baby might be in danger. Most parents who are faced with this reality go home in shock and have to make the big decision that is weighing on their minds, “Do I dare Google it? Or do I protect myself from unnecessary worry and avoid the computer and trust my doctors to handle it?” Most well meaning family members and friends encourage the terrified parents NOT to Google it. I had to look it up on my computer as soon as I got home because I honestly had no idea what my OB was talking about. I wanted to know what I needed to do to protect my child and I was desperate for some idea of what the rest of my pregnancy would look like. Unfortunately there was hardly any information available so I felt lost.

I have learned so much since that day four years ago. I have heard countless stories and watched many pregnancies play out and I have noticed a trend. There is one mistake many women make during an iso (isoimmunization/alloimmunization) pregnancy. I made this mistake with Lucy, unfortunately, and it is the main reason she is not here with me today. Because of what happened with Lucy, I knew not to make this mistake again when I got pregnant with Nora and now she is a happy, healthy one year old.

So, what is the biggest mistake most people make once they discover that they are sensitized and have anti-kell antibodies (or other red cell antibodies) during pregnancy?

BLINDLY TRUSTING YOUR DOCTOR

I want to be clear before going any further, that I admire and respect doctors so much. I have always been amazed at their courage and confidence in the midst of dangerous, stressful situations. Often one small mistake can mean the difference between life and death. I don’t think I could ever do what they do on a daily basis. But, there has to be a balance. We are trained in our culture to trust our doctors and almost view them as gods. We are taught not to question them. The truth is, they are human, just like us. Isoimmunization during pregnancy is a very rare condition and most doctors and even maternal fetal medicine specialists do not see many cases on a regular basis. This does not mean that they are bad doctors, it just means that they don’t have much experience treating this condition. The treatments and protocols for iso pregnancies are constantly evolving and improving and many of them are fairly new. This means that many of the protocols in place around the world today are not up to date.

There is only one hospital in my whole state (Alabama) that treats pregnant women with anti-kell antibodies. When I was pregnant with Lucy they told me that they don’t start MCA scans until 20-22 weeks at the earliest. At my first appointment I remember sitting in the exam room waiting for the MFM (maternal fetal medicine specialist) to come in and introduce himself. Before he came in I heard him take my chart off the door and flip through it. “Anti-kell antibodies… What’s the critical titer for anti-kell?” No one answered him, so he asked down the hallway, “Does anybody know the critical titer for anti-kell?” I had done a little research online and I knew it was eight. “It’s eight,” I thought.  After several doctors discussed it they decided it was eight and then he entered the room and introduced himself. I felt very uneasy. Why didn’t he know the most basic fact about this condition? Why did I know it and he didn’t? He was supposed to be the one who was going to educate me on the condition and he was supposed to be the one who was going to protect my baby. He was the “expert” though, and the one with the medical degree so I trusted him with my baby’s life. He told me that my baby would be safe since it was my first sensitized pregnancy. Even though my titer was very high (1,024) they said the baby would probably be fine. I asked if there was a way to protect the baby from the antibodies but they said there wasn’t and that she would be ok. I had researched and found some information about plasmapheresis and IVIG so I asked the MFM if we could try it. They said it wouldn’t work, it was just experimental and I couldn’t and didn’t need to try it. The insurance wouldn’t cover it anyway unless I had lost a baby already. I let it go and trusted the doctor. (I found out later that my insurance would have covered the treatments for Lucy.)

We had many people tell us how blessed we were to be going to the best hospital in the state. We were told they were the experts and were very qualified MFMs. Looking back, I see now that the protocols and treatment options at this hospital for iso pregnancies are out of date and desperately need to be updated and changed. Waiting until 20-22 weeks to start MCA scans with a critical titer (especially one in the thousands) is extremely dangerous and reckless. I had seen online that most women had their first MCA scan by 18 weeks, some as early as 15 or 16 weeks. When I brought that up to my MFM he said they didn’t do them that early because even if the baby was anemic, there was nothing they could do for the baby that early. They told me IUTs (intrauterine blood transfusions) can’t be done until 20-24 weeks at the earliest. Again, I had read several accounts online of women having successful IUTs as early as 16, 17 and 18 weeks. But that instinct to trust the doctor and not to question or doubt their expertise remained in me and I felt very uncomfortable. I didn’t know what to do.

Many women find themselves in a similar situation. I get questions all the time like, “I have a very qualified MFM but he says I don’t need weekly MCA scans, even though my titer is critical. I don’t know what to do.” Or “My MCA scan was 1.56 but the doctor said he wants to wait a week and recheck next Tuesday. Should I ask to be seen sooner? He insisted that it would be ok to wait a week.” Or “My MFM is doing monthly titer checks and will start MCA scans when my titer hits 32. You are saying the critical titer for anti-kell is eight but my doctor disagrees.” I’ve even heard extremely confused doctors give advice such as, “Don’t worry, these antibodies can’t cross the placenta, so your baby is safe and doesn’t need to be monitored.” Or, on the opposite end of the confusion spectrum, “Since you have anti-kell antibodies you can’t have any more babies because it’s too dangerous…the fact that you were sensitized by a blood transfusion and your husband is kell negative is irrelevant.” Almost every time I hear a story about a woman losing her baby to this disorder it is because the proper treatment or monitoring was not performed.

I am not saying that you shouldn’t ever trust your doctor or MFM but YOU have as much authority as the doctor does when it comes to treatment plans and monitoring for your baby. You have to work together with the doctor to make sure your baby gets the best treatment possible. It should be a partnership between you and your MFM, a partnership in which you feel comfortable asking questions if there is concern about the treatment plan and one in which decisions are made together by you and the MFM. Ideally all of healthcare should be a partnership and patient education and involvement should be encouraged. If the doctor does not invite you to be part of the decision making process, insert yourself into the discussion. You will have to work hard and fight for your baby. Do your research (I will hopefully be adding more info here on the blog soon), join the Iso Moms facebook group (find me on facebook- Bethany Weathersby), make sure you understand isoimmunization/alloimmunization and how it affects your baby, write information down in a notebook, print off important facts and studies, and bring it all with you to your first appointment with your MFM. Never be ok with vague test results like, “You have a high titer” or “The MCA scan shows that the baby’s anemia is in the safe zone.” You cannot let the MFM make those calls since their information and protocols might be out of date. Ask for your exact titer and at every MCA scan ask for the PSV results or the MoM number and always write it down. Then YOU decide if your titer is critical or if the MoM is in the safe zone. If you are having an IUT, ask for the beginning and ending hematocrit at the start and the end of the procedure. Obviously there are tests that you cannot interpret because you are not a professional (like certain ultrasounds) but when it comes to numbers and blood levels there are exact numbers to look for or be wary of. If you aren’t sure, ask the women in the Iso Moms group. My MFMs here in Alabama see 1-2 kell cases per year at the most. The women in the Iso Moms group sees hundreds of cases per year. Be respectful and listen to the MFM but make sure that the treatments or lack of treatments he suggests match up with the information you have. Don’t be afraid to speak up if you have questions or if the MFM says something you disagree with. I know it is hard to make a suggestion to the expert or to doubt something he says, but you have to do what it takes to protect your baby. If your baby dies, they probably won’t remember your child’s name months, weeks, or even days later, but you will be broken for the rest of your life. You are one of many patients they see on a regular basis, but this is your one and only baby who can never be replaced. The mama bear instinct that was born in you the day you found out you would be a mother was placed in you for such a time as this. Harness that power and that primal need to protect your baby. Who cares if the MFM thinks you are pushy or arrogant or annoying? Your baby is depending on you. Never be afraid to speak up.

After Lucy died and I got pregnant with Nora I went back to the same MFMs that treated Lucy since they are the only ones in the whole state. I had Dr. Moise’s study on plasmapheresis and IVIG printed off and I had come up with a treatment plan (thanks to the Iso Moms group and Dr. Moise) that I was confident about. I listened to their treatment plan first, which was, “Well, you have a 50/50 chance of having a kell positive baby. Let’s hope the baby is negative. We want to see you back at 16 weeks for a check up.” If I had gone with their plan, Nora would be dead. I explained that I did not feel comfortable with their plan for my baby and I wanted to try Dr. Moise’s treatments instead. They were not excited about my suggestions. There were deep sighs and eye rolls and smirks at the corner of the mouth. I hated being the pushy one, the annoying one, the one they would all talk about later, but Lucy had lit a fire inside me that enabled me to fight with every fiber of my being for this new baby of mine. I don’t want you to have to lose a baby first before you learn that you HAVE TO FIGHT for your baby’s life. I want to light that fire in you now. Your baby deserves the best chance of life possible and your baby deserves a mama who is willing to look stupid or be annoying to save his or her life. Your child’s life is worth it. You can do this.

So, when my MFMs were less than thrilled about my treatment suggestions  I told them if they were not ok with it, that was fine, I would leave the state and find a doctor who would do it. I gave them Dr. Moise’s contact information and the study I had printed off. They said they needed time to think about it. One MFM said he would be willing to do the IVIG portion of the treatment plan, but not the plasmapheresis for some reason. Thankfully I had my first appointment with them at six weeks since we knew my antibodies were so severe, so I had time to let them discuss it and make a decision. The MFM contacted Dr. Moise to discuss the treatment and agreed to start plasmapheresis and IVIG at 11 weeks to prevent Nora from becoming anemic. The MFMs and nurses did put a lot of work into setting these treatments up and getting my insurance to cover it. I am so thankful that the MFM contacted Dr. Moise and decided to try something new because it saved my child’s life.

There have been times when I disagreed with an MFM on something, but I had to be the one to back down. It is a delicate balance, knowing when to fight and when to trust. With Nora, I desperately wanted to double my IVIG because her first MCA scans (15 and 16 weeks) were around 1.3-1.4 (some between 1.4-1.5) so I thought she was getting anemic already. My MFM said that he wouldn’t do it. I fought and pushed and pestered him, but he really didn’t feel comfortable with it. I thought it was a death sentence for my baby but after he contacted Dr. Moise and his decision was backed by the expert, I had to relent. It was HARD to let go and trust them, but I did and they were right. The IVIG did not need to be doubled. After I moved to Houston at 18 weeks and Dr. Moise took over my care, I was terrified because he only wanted to do one MCA scan per week. In Alabama they had been doing two per week. I told him it made me uncomfortable to wait a whole week between scans but he insisted that the baby would be fine until the next scan. I wasn’t sure if I should fight for more scans or trust him. I had to purposefully think through my emotions; I was so anxious about my baby that I was trying to be in control to feel safer. I considered my MFM, Dr. Moise, and acknowledged that there were no red flags so I could trust him. When I told him how nervous I was with his decision to scan only once per week he didn’t brush my concerns off. He listened and then he showed me specific things on the ultrasound that assured him Nora wasn’t anemic or in distress (her heart was not dilated at all, there were no signs of fluid building up in any of her organs, her bowels looked normal, my amniotic fluid levels were normal, her heart rate was good and she was active, the MoM was under 1.5.) I felt better after he pointed out exactly why he was ok waiting a week to rescan. I submitted and agreed to scan once a week and he was right. My baby Nora was fine. So, fight for the basics, speak up and trust your instincts, ask lots of questions and remember that sometimes you have to be the one to back down, as long as the MFM is trustworthy, doesn’t have any red flags and is following the basic treatment protocols.

There are certain red flags you can watch for when you first meet your MFM. If you see several red flags, look for a new MFM as soon as possible, even if it means you have to travel several hours to find the right one. We had to travel eleven hours away and relocate for five months to find the right MFM for us and it was completely worth it. You wouldn’t hire a babysitter that you didn’t know and weren’t sure about so be assertive about who you are trusting with your baby’s life.

Red Flags to Watch For:

  • The information given by the MFM does not match up with the basics* listed at the bottom of this blog post.
  • The MFM acts insulted and irritated when you ask questions or when you challenge something (s)he says.
  • The MFM is too busy or proud to listen to all of your concerns and answer all of your questions.
  • The MFM is not willing to learn new information from sources you bring in or consult with other doctors at a different hospital.
  • The MFM is only willing to do the minimum amount (or less) of monitoring required.
  • Your MFM is not willing to let you be part of the decision making process and does not share specific test results with you.

Notice, none of the red flags refer to lack of experience with iso pregnancies. Even doctors who have rarely encountered this disorder can be wonderful MFMs as long as they are humble and willing to learn about it (except when it comes to the actual surgical procedures like IUTs and amnios. Only let very experienced MFMs perform those procedures on you.) Some of the most proactive MFMs I’ve read about are those who started off not knowing much about iso pregnancies or how to treat them. They did their research, contacted other doctors, asked questions, listened to their patients, referred their patients to more experienced MFMs when necessary and were willing to try new treatments to save the babies, and they did.

*Here is a reminder of the basics. If your MFM doesn’t agree with this information, consider that a red flag.

  • The only way you can become sensitized to the kell antigen is from a previous pregnancy (or occasionally your current pregnancy) or a blood transfusion.
  • You need to know as soon as possible what your antibody titer is and you need to know what the critical titer is for your particular antibody. (Critical titers: anti-kell:8, anti-D:16, anti-c:16)
  • Your baby can only be affected by your antibodies if (s)he is kell positive.
  • The baby’s father should be tested for the kell antigen (NOT the antibodies!) as soon as possible.
  • If the baby’s father is negative for the kell antigen, then the baby has a 0% chance of being kell positive, which means the baby cannot be harmed by your antibodies.
  • If the baby’s father is kell positive, he needs to be phenotyped to see if he is homozygous or heterzygous for kell.
  • If the father is homozygous, the baby has a 100% chance of being kell positive.
  • If the father is heterozygous, the baby has a 50% chance of being kell positive.
  • You should have an appointment set up with an MFM by 16 weeks at the latest.
  • If your titer is below critical you need to have your titer checked regularly and an MCA scan done at some point to check the baby for anemia.
  • Titers do not always predict how aggressive the antibodies are, but often, high titers mean the baby is in more danger.
  • If your titer is 8 or above, MCA scans need to start between 16-18 weeks. No later than 18 weeks!
  • If you have a titer in the hundreds or thousands, you should have your first MCA scan at 16 weeks. I had my first one with Lucy at the end of my 17th week and it was too late by then. I had my first MCA scan with Nora at 15 weeks.
  • Just because it is your first sensitized pregnancy, it doesn’t mean the baby won’t be affected. I lost my baby in my first sensitized pregnancy.
  • The most accurate way to know for sure whether the baby is kell negative or kell positive is to do an amniocentesis around 16 weeks. Some doctors insist on doing the amnio, other doctors refuse to do it. The choice is up to you and what you feel comfortable with. You can also do a non-invasive maternal blood test to find out whether baby is kell positive or kell negative at 14 weeks.
  • You usually don’t HAVE to know whether the baby is kell positive or negative. The doctors can monitor baby as if (s)he is positive since the methods used to monitor are safe and non-invasive.
  • If your titer is critical, you should have MCA scans every week. Fetal anemia can develop very quickly so waiting over one week to do an MCA scan is putting your baby at risk.
  • When the doctors do the MCA scans, they also need to check for other signs of anemia or distress in the baby (dilated heart, echogenic bowels, ascites/fluid starting to collect in the organs, excess amniotic fluid, signs of distress, etc.)
  • If the MCA scans are showing an upward trend or are getting close to 1.5, the MCA scans can be done twice a week.
  • When your MoM gets to 1.5 or over you need to have an IUT (interuterine blood transfusion.)
  • The IUT needs to be performed by someone who has had experience performing the procedure.
  • If you have already lost a baby to these antibodies or a previous baby was seriously affected or you have a titer in the thousands, plasmapheresis and IVIG should be considered. With a little work, most insurance companies WILL cover these treatments. Here is the study Dr. Moise did proving the efficacy of these treatments for severe isoimmunization/alloimmunization in pregnant women.
  • If your baby becomes anemic very early in the pregnancy, an IUT can be performed by putting blood into the baby’s belly (IPT) instead of the umbilical cord (IVT.) You should also start IVIG treatments right away. I have seen severely anemic, hydropic babies at 16 weeks saved because the mother was started on IVIG right away. The anemia disappeared and the fetal hydrops resolved because of the IVIG.
  • Babies should be checked the day after the IUT to make sure they aren’t in distress. My MFMs insisted that Lucy did not need to be rechecked for a whole week after her IUT (even though her beginning hematocrit was six, which is extremely low.) She was dying that entire week and by the time they scanned her again it was too late. Nora (my rainbow baby who survived) always had an ultrasound 24 hours after her IUT.
  • In severe cases, IUTs can be performed only days after the first one if the baby needs it.
  • After the baby is viable, many doctors recommend steroids to develop the baby’s lungs before an IUT is performed. If an MCA scan is done after the steroids have been administered, it usually will give a false low number. The MoM will be lowered but the baby will still be anemic.
  • Here is information regarding after birth care for your baby . You can print this information off and ask if your MFM agrees with it, but often it is a neonatal team dealing with baby at that point and not so much the MFM so it might not be as relevant.

I would like to end this post by saying if you have lost a baby to these antibodies, I am so very sorry. If your baby died because (s)he did not get the right monitoring and treatment, the last thing I want you to feel is guilt. I know how hard that is, though. Lucy would probably be alive today if she had received the care Nora received and I have struggled a lot with guilt because of it. I know that when I was pregnant with Lucy, I did my very best to save my baby. I did everything I knew how to do and I know that you did too. We honor our babies’ lives by using their stories to prevent other babies from going through the same thing. Our babies felt nothing but love from us their whole lives and we should hold our heads up proudly knowing that we did the best we could to save them at the time.

This blog post was written in loving memory of:

HUDSON JOSEPH HERDMAN

LUCY DAIR WEATHERSBY

RYLEE ANN-MARIE

EPHREM FABIAN MEYER

KRISTIAN MICHAEL PINEDA

JULIA MARIE GETTMAN

GRACE DAISY MARIE PUCHMEYER

GABRIEL ZACHARIAH LUCAS

ADALYNN FAITH LUCAS

Four Years In Heaven

Oh my baby, how I miss you. Every day, every minute for these past four years I have ached for you. That chamber of my heart that is only Lucy shaped remains empty. I know how your biggest brother Liam feels in my arms, how your big brother Asher feels in my arms and how your baby sister Nora feels in my arms, but I don’t know how you feel and my arms ache for you. A mama’s arms belong around her babies. I wish you could be here to play with your little sister Nora, you would love her so much. Your absence in our family is felt every single day. I see the space where you should be that nobody else sees. I miss you.

I miss you.

It has been four years since Lucy’s heart stopped and mine was irreparably broken. It is a feat, surviving four whole years without your child. I feel like I should be awarded a medal just for still being here, four years later, without her. The beautiful thing about living this life with my God is that He has more for us on this earth than just surviving. The past four years have been the saddest and most difficult of my entire life, but they have also been the most beautiful, the most redemptive, and the most productive years of my life.

As most of you know, when Lucy died I was told I could not have any more babies. It felt like an extra cruel blow because of who God had created me to be. He made me very maternal from infancy. I have always been obsessed with babies. They were the best thing in the world to me. My undergraduate degree is in Early Childhood Education. I was told that a degree in Elementary Education would be more useful so I eventually agreed to go one more semester to also get my Elementary Ed degree, but all I really cared about was getting that Early Childhood degree because I just wanted to teach the babies. My whole life I waited and dreamed about having a baby of my own. I wanted to fast forward time until I held my baby in my arms for the first time. My greatest wish for my life was to have a big family; LOTS of babies. For God to allow my baby to die and then to leave me with a pregnancy condition that would repeat itself and make my pregnancies “fatal” seemed so cruel. It felt like a custom made attack, designed to destroy the most beloved part of who I was.

I couldn’t even look at babies after Lucy died, they physically nauseated me. During my counseling sessions I had therapy for PTSD and had to work through the most terrifying scenarios like, “You’re at the grocery store and suddenly a woman comes around the corner carrying a baby, what do you do?” I remember being on a flight only a couple months after losing Lucy and there was a baby next to me on the airplane. I felt like I was going to have a panic attack. Every sound she made caused a physical pain in my chest. I could not believe how agonizing this adorable baby next to me was. My pain originated from my deep love for babies, especially my love for my baby girl who had been killed by my own body, and the love I had for my future babies who would never exist because of anti-kell antibodies. Every baby I saw reminded me of my dead dreams for my family and my dead daughter. And if I’m truly honest, they represented the lie that for some reason God loved those other parents more than He loved me because their babies were alive. The parents of the baby next to me on the airplane seemed to sense my discomfort. They probably thought I was just one of those adults who gets irritated with loud babies on planes. If only they knew the truth.

If only I knew the truth, that God was not using my tragedies as a custom made weapon to destroy me. God was going to take my little Lucy’s life and my tragedies and He was going to fashion them into a custom made ministry just for me. And guess who God has me ministering to now? Women and their BABIES. Beautiful babies who are possibly in danger like Lucy was. Babies in Pakistan, babies in Canada, babies in Australia and Egypt, babies in the UK and the US, babies in Germany and Israel, Cambodia, Switzerland, Russia, France and even babies right here in Alabama. I get to help babies every single day and it is some of the most rewarding work I have ever done. I get to encourage and empower women who have babies in the womb, women who have babies in heaven, women with babies waiting in their future, women with newborns and women with broken hearts. I love these women, and I desperately love their babies. God uses every single one of these parents who reaches out to me and He uses every single baby to restore a small piece of my broken heart and to restore my hope in Him.

Here I am four years later, and now I am able to look at a baby and see redemption, hope and the greatness of God. Oh the redemption that God has brought through these babies and their moms!

And so, without any more delay, here are some of the beautiful babies that have been helped through Lucy’s story and my blog. Thank you Jesus, for each one of these lives that has been touched by my Lucy’s.

COOPER cooper

CLAIREclaire

EVAeva

JESSA JADEjessa-jade

TYLERtyler

JACOBjacob

KRISTIAN (in heaven with Lucy) and MIKAHkristian-and-mikah

JULIA JOYjulia-joy

SAGE (in heaven with Lucy)sage

KETHRYNkethryn

ROSE with big brother and sister Logan and Havenrose-with-big-brother-and-sister-logan-and-haven

SHUA, ARI and MOSELLEshua-ari-and-moselle

LIAMliam

ELLIEellie

MILAmila

MATILDAmatilda

LUCY ANNElucy-anne

GABRIELLA GRACEgabriella-grace

OSCARoscar

WESLEY JAMESwesley-james

SKYLAR ROSEskylar-rose

AVAava

BRIANA ANNEbriana-anne

LANGSTONlangston

OWEN BLAKE (being born right now, on Lucy’s birthday!)owen-blake

HADRIANhadrian

BABY BOY ROBILLIARDrobilliard

ASAIAHasaiah

NYAHnyah

And of course, NORA JULIET who would not be here if it weren’t for Lucy

And this is baby Hudson, whose mom did not come across my blog until a few days after her son was stillborn this past December. This is why I push so hard to get Lucy’s story out into the world, because Hudson would be here today if only the doctors had provided the right monitoring and treatment. Lucy would probably be here today if she had been given the correct monitoring and treatment too. I will keep telling our story and fighting for the Hudsons and the Lucys who deserve to be here with us.

“I wish I had read your blog whilst pregnant because I would have had the knowledge I have now and possibly could have saved my baby Hudson who was born sleeping on 29th December 2016 due to Anti-K antibodies and having no close monitoring – I was totally unaware of what most of it all meant until I read your blog.”

HUDSONhudson

The love I feel for these babies is unreal. The very tragedy I thought would push babies out of my life has brought so many babies into my life that I have a deep affection for. They are my “yes” from God.

For anyone who feels like God has turned His back on you, for anyone who has suffered unimaginable loss and for those whose lives have not turned out the way they planned, just decide to trust God anyway. Because I am convinced that when there is great loss combined with great trust in God, miraculous things happen. Yes, even a one pound baby girl who never took a breath outside of the womb can leave a legacy that reaches throughout the world.

Happy fourth birthday in heaven, Lucy Dair. I am proud to be your mama. You were worth it all. Four years closer to having you forever. Despite all the pain and agony of waiting to have you, I absolutely love being your mama.

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Treasuring Up All These Things

Luke 2:19 But Mary treasured up all these things and pondered them in her heart.

This verse in Luke is one of my favorite verses in the Bible. Mary had just given birth to her first child and a little while later a group of shepherds came running in, telling her about angels that had just visited them in the fields. The angels were praising Jesus, the same Jesus Mary had just given birth to. What must have been going through her head at that moment?

As 2016 draws to a close I realize that this year has been a year of treasuring up and pondering; like Mary did in her heart when the shepherds came rushing in after Jesus was born. I can only imagine how overwhelmed Mary was after going through labor and delivery, then facing these visitors and their message from God. Sometimes the weight of a moment is too much to take in right then. Sometimes God reveals things to us that we can’t possibly fathom. Sometimes the beauty and wonder of the moment deserves more than the time it’s given. Life is so fleeting. I often wish I could pause time to fully take in the wonder before me, chubby arms and legs, toddler sized proportions in nothing but a diaper, the sweet five year old love ballads to Mommy, the gentle kiss from biggest brother to tiniest sister. Since I can’t stop time I treasure up the moment and soak it in, ponder it in my heart, store it up to take out later and admire. My year has been full of these moments that I want to keep forever. Moments that point back to God and His goodness.

The moment when Mary stopped to treasure up all the things that were happening around her, to ponder the message God was sending her about her child, often reminds me of a day when I did the same but in very different circumstances. February 8th, 2013, the worst day of my life, when my daughter’s heart stopped and my body became a tomb, God made His radical promise to me, “I WILL REDEEM THIS.” I had no energy or clarity of mind to even attempt to grasp what the words meant, so I stored it up for later. Like Mary, who probably could not believe what was happening to her or how the path of her life had suddenly gone a completely different direction than expected, I struggled to take it all in. I was in shock. But God spoke over and over again, an audible voice in my head, “I WILL REDEEM IT.” And each time He spoke I took His promise like a treasure and stored it away to ponder later. Since that day, almost four years ago, I have contemplated the promise many times, turning it over in my mind. God promised to redeem my daughter Lucy’s death and all the loss and pain that came with it. But did He realize how much was lost on that day and all the days since then? That promise of redemption feels too large. It feels impossible. The first year or two after Lucy’s death I reached in and took that promise out in anger, wielding it like a weapon towards God, “You promised me! But you let more tragedy strike instead! Why would you make a promise you could never fulfill?” How could He possibly repay me for my daughter’s death? Over the years God has patiently and carefully crafted my story, moment by moment, using all the loss for good, mending broken places and making the barren wasteland fruitful. And yes, even redeeming parts of my Lucy loss that I thought would never be redeemed on earth.

This year especially I have seen the redemption He promised emerge more than ever. There have been countless moments of glory, beauty and joy that I never thought I would experience again on earth, too many to list here. Many of these moments involved my miracle baby Nora and many of these moments involved other women with high risk pregnancies who were looking for support. I treasure all these things up and praise God for them (especially my baby Nora!)

nora-face

There have been other moments this past year that felt surreal, heavy and empty at the same time because Lucy wasn’t in them:

The play date where all the babies have their preschool siblings along too but three year old Lucy is missing. I’m supposed to choke down my chicken nuggets and smile like everything is normal. I’m the only one who sees the empty space where she should be.

Folding up and putting away her empty stocking on Christmas Eve after the other three have been filled with toys and chocolate.

Telling her brothers that I am sorry, I don’t know what she would look like today and watching their hot tears stream down.

Suddenly realizing in the middle of an English lesson that the little girl I’m teaching is the exact age that Lucy would be today. Her big brown eyes staring up at me, her little laugh. Would Lucy look like that? I don’t even know what her laugh sounds like. I weep for my baby girl the entire drive home.

Over the course of this year God has been teaching me to pause right then and ponder the painful moment, gather it up and give it to God to be redeemed later. I’m learning to trust that He WILL redeem even that terrible moment. Every tear shed, every time the weight of grief feels too heavy to bear, every single thing I miss with Lucy will be redeemed, repaid and restored. God can redeem the deepest loss, even your loss. He can bring beauty from ashes, He can even heal parts of your heart that you thought were broken forever. Some things can never be mended until we get to heaven, but these things that He does redeem on earth are our foreshadowing of the glory and restoration to come.

If you are reading this I have prayed for you. I’ve prayed for your 2017, that God would bring about the most beautiful redemption in your life. I’ve prayed for your healing and for your joy, that God would give you the desires of your heart and would grant you the request of your lips. Be bold and ask Him for the thing you so desperately want. Gather up all of your hurts and hand them over to Him to be redeemed. Those who sow with tears will reap with songs of joy.

Psalm 126  When the Lord restored the fortunes of Zion, we were like those who dreamed. Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The Lord has done great things for them.” The Lord has done great things for us, and we are filled with joy. Restore our fortunes, Lord, like streams in the Negev. Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them.