First and Second IUT

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Well, our baby’s anemia escalated quicker than we expected. At 24 weeks the baby’s MoM was 1.23, which is a good number. Six days later his number had jumped to 1.5. A few readings were just below 1.5 and several were as high as 1.56. This is why it is so important to have weekly MCA scans if you have a critical titer. Many MFMs do MCA scans every two weeks, even for women with high or critical titers. Some MFMs say they will scan every two weeks and if the number goes up to 1.3 they will start scanning weekly. But fetal anemia can happen in a matter of days. I can’t imagine what would have happened if we were scanning every two weeks or waiting for a 1.3 to start scanning every week. My son might not be alive right now if we had. Women with antibodies, if you have a Kell titer of 4 or above or any other antibody with a titer of 16 or above, insist on weekly MCA scans. If your MFM won’t provide the weekly MCA scans, find an MFM who will. It is worth it. Always take the path of least regret.

Dr. Trevett performed our son’s first IUT at 25 weeks and 3 days. I was incredibly anxious and nervous imagining all the things that could go wrong and thinking through what would happen if baby had to be delivered at 25 weeks. I was focusing way too much on the fear and risks instead of focusing on God and leaning into Him for comfort. Time and time again I have seen the consequences in my life of not spending enough time reading my Bible and praying. When I don’t discipline myself and set aside time every day to spend with God I make selfish decisions, I live in fear and doubt and I miss out on so much abundance and peace that could be mine.

Anyway, I’ve been so busy that I haven’t been spending daily time with God and leading up to the first IUT I was an emotional mess. We also had COVID risks and restrictions, protests and a curfew in Atlanta that made things a bit more difficult logistically and emotionally. The day before the IUT I was having a lot of contractions, some spotting and decreased movement from the baby. Dr Trevett told me to go right to labor and delivery once we got to Atlanta. Once we were there the baby started moving more and contractions spaced out and basically disappeared. They watched baby closely and he looked fine on the monitors.

The next morning the IUT didn’t go quite as planned. They had trouble getting good access to the cord (possibly because of contractions and shifting of the cord placement.) The paralytic they gave the baby did not work and he continued to kick and move during the procedure. They gave him a second dose of paralytic and he still continued moving around. The anesthesiologist told me once I was in the OR that he had decided to just use a local anesthetic instead of an IV sedative for me, which immediately increased my anxiety. I asked him to please give me the sedative like we had discussed and he did, but it didn’t seem to take the edge off for me. I still felt completely awake and too aware of the procedure to relax. The baby finally bucked and knocked the needle out and Dr. Trevett decided to stop the procedure. Baby’s beginning hematocrit was 25 and it looked like they got 20 ccs of donor blood into the cord but they weren’t able to get an ending hematocrit because the baby was being so crazy.

The baby never slowed down or stopped moving, which is really not safe during an IUT. I was glad that Dr. Trevett and Dr. Gomez (who helps with all of my IUTs) decided to stop the procedure. They repeated the MCA scan the day after the IUT and the MoM was the same as it had been before the IUT which gave the impression that baby was still anemic. Dr. Trevett decided that he wanted to go in again 48 hours later and repeat the IUT. Selfishly, I was very disappointed that we had to do it again so soon but deep down I knew that was the safest choice for the baby. I called Dr. Moise and discussed the IUT with him and felt much better afterwards. He also thought it was a good idea to repeat the IUT 48 hours after the first.

For the third time in a week we drove the four hours to Atlanta (thank you Mom for watching all the kids for us last minute!) This time I knew I had to do a better job preparing mentally and emotionally for the IUT. I spent time reading my Bible, praying, listening to worship music, etc. I read an Instagram post from Kalley Heiligenthal whose two year old daughter, Olive, died earlier this year. The quote affected me deeply and filled me with courage and peace.

They say motherhood is having part of your heart walk around on the outside, in the elements, wild and open. In my case, part of me is out twirling here on this soil through Elsie and part of me is dancing in heaven through Olive. The day Olive left I sobbed, saying it was all worth it for the 2 years 1 month and 10 days I had her here. It’s worth every one of the million tears, worth the vulnerability, the pain. Loving her is worth it all. What I’d give for my freedoms to be limited again by her, for my body to stretch and swell carrying her, for my sleep to be stunted, another epic Olive breakfast hunger strike and a “you guys have to share with each other or mommy’s gonna go crazy” chat. For another snuggle, another “I yove you”, a belly tickle mid-diaper change. My heart on the outside. But I can’t grasp white knuckle to Elsie for fear of losing. I can’t give way to regret, I can’t control or manipulate and call it safety, I can’t measure my love or calculate my heart to avoid pain. I won’t, because that’s not love. That’s not living. It’s a slow death on earth. Love and fear refuse to coexist, so which one’s hand am I holding? Do it right and you’re at risk. What other choice do we have? That’s being a mother, that’s selflessness, that’s choosing to live fully alive, that’s giving our kids the example they deserve of how to do this life. Being a mom is one of the bravest things that can be done, irrevocably putting your heart on the line. Love is worth that, always. -Kalley Heiligenthal

Her words made me realize that I was trying to grasp white knuckle to this baby, to control and manipulate and call it safety. This baby is not Lucy, this situation is different and these doctors sure aren’t the same ones I had with my first Kell pregnancy. As I did with Nora and Callum, I have to make a conscious effort to remember that I am not in control, I have done my best to choose wise, competent doctors and I have advocated well for this baby. I don’t have to allow fear and trauma from my past rule my life. I can place this baby in God’s hands and trust Him to take care of us both.

The second IUT went much better than the first. Dr. Trevett and I both talked to the anesthesiologist about providing conscious sedation for me during the IUT and he did a great job during the procedure. I felt much more relaxed and at peace the second time. Dr. Trevett sedated and paralyzed the baby and he was completely still during the IUT. The beginning hematocrit was 29 and they got it up to about 45. The next IUT is this coming Friday, June 19.

I feel so thankful for Dr. Trevett and Dr. Moise and the whole team of doctors and nurses who are doing their best to help my baby survive. A week ago I had my last IVIG infusion and our whole family was sad to say goodbye to my home care nurse, Jennifer. Once IUTs start, there is basically no point in continuing the IVIG since the purpose of doing the infusions is to prevent/delay the need for IUTs. Jennifer came every week since my first trimester (sometimes twice a week) to administer my IVIG at home. She was so kind and patient with the kids and she was always an encouragement to me. She even gave us a gift card on her last day so we could buy some things for the baby. Jennifer is just one example of the many people working behind the scenes to keep our baby alive and healthy. These people usually get very little recognition for their contributions, but they are so important. My hematologist, Dr. Franco, my nephrologist who handled my plasmapheresis, Dr. Murphy, the doctors and nurses who surgically placed my permacath and port, the nurses and doctors at the infusion center, the many sonographers who take such care scanning my boy every week, the many people scheduling my treatments, drawing my blood, finding matching donor blood for the baby, monitoring the baby during and after IUTs, my OBs, Dr. Chwe and Dr. Howard, the blood donors who gave their blood in order to help a stranger. There are too many people to list but we are thankful for every one of them. Here is a picture of Jennifer and me on my last day of IVIG:

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Please continue praying for our baby boy who has several IUTs ahead of him before delivery. Please pray for Dr. Trevett and all of the people working so hard to help our son stay healthy. Here are a few more pictures from the last couple of weeks:

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Josh got to join me for the first IUT (only his second time in the OR out of 11 IUTs total)

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Baby is Viable!

It’s been a few weeks since I updated the blog. Our baby boy is still doing really well and holding his own against the antibodies week by week. I am now 23 weeks and 4 days pregnant which means that the baby is technically viable. The survival rates for a baby born at 23-24 weeks are not great, but survival is a possibility, which is reassuring. Hopefully he has many more weeks on the inside though!

Below you can see his MoMs for the past few weeks (1.5 means he is anemic enough to need a blood transfusion.) I’ll include Callum and Nora’s numbers for comparison.

Here are Callum’s, Nora’s and Baby’s MoMs:

A few weeks ago we noticed that my titer had gone up from 128 to 512 and baby’s MoM was higher so Dr. Trevett decided that we should repeat the three rounds of plasmapheresis.

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After the plasmapheresis treatments I had a double loading dose of IVIG. This seemed to lower baby’s MoMs and my titer went back down to 128. The goal is to help the baby fight off the antibodies and avoid fetal anemia for as long as possible. The later we start IUTs the better since those come with some serious risks and must be repeated every 2-3 weeks until delivery. After the extra plasmapheresis treatments we finally decided it was time to remove my permacath which had been causing problems almost from the start. The permacath is the bulky, double lumen catheter that is used for plasmapheresis treatments. It kept getting clotted and the adhesive on the dressing caused allergic skin reactions. Since the baby is now viable and IUTs are a little bit safer there is no need for any more plasmapheresis treatments, so we knew I wouldn’t be needing the permacath again. It was such a relief to get that thing out of my jugular! I finally was allowed to shower/swim for the first time in 9 weeks and I can pick Callum up without worrying about snagging or pulling on the permacath. I now just have the regular port under my skin that we use every week for my IVIG infusions. That will be surgically removed once we finish IVIG treatments (whenever the first IUT is needed.) Here’s a picture of the permacath before and after removal.

Our baby is still measuring big, usually about 2 weeks ahead, so that is a comfort knowing he will have to be born early. Dr. Trevett’s goal is to do the last IUT at 34-35 weeks and deliver 2-3 weeks after that. But we know realistically that the baby might have to be born anytime between now and 37 weeks. Please pray that the baby will not be born until August (when I’m 34+ weeks.) Here are some pictures of my gigantic belly and our sweet boy. Thanks as always for your amazing support, prayers and encouragement as we navigate this stressful pregnancy.

 

Baby Brother Update- 17 and 18 Weeks

Our baby boy is still holding steady and doing well. At 17 weeks his MoM was 1.08. Yesterday at 18 weeks his highest MoM was 1.2 and there were no signs of extra fluid, dilated heart or echogenic bowels (possible signs of anemia.) He is growing beautifully and now weighs 9 ounces. He consistently has been measuring about a week or two ahead each time. I fall more in love with him at each ultrasound. What a blessing to get to see my baby grow week after week. He is always super active during his scans. This week the ultrasound tech told me he was the most active baby she had ever scanned. Here are a few pictures from his 18 week ultrasound:

This week has been difficult for me emotionally since this is the gestation that we found out Lucy was severely anemic. As I did during my pregnancies with Nora and Callum, I can’t help but compare this baby’s MoMs with Lucy’s MoM at 18 weeks. Here are all of their numbers together. Remember, 1.5 means the baby is anemic and needs an intrauterine blood transfusion. The closer to 1 the better.

All taken at 18 weeks gestation:

Lucy:     2.5             (no plasmapheresis, no IVIG)

Nora:     1.3-1.48     (plasmapheresis and IVIG)

Callum: 1.3              (plasmapheresis and IVIG)

Baby:     1.2            (plasmapheresis and IVIG)

All of the conversations I had with my MFMs in Alabama during my pregnancy with Lucy come back to me now- asking them to please do an early MCA scan to check Lucy for anemia, asking if we should start plasmapheresis and IVIG treatments, asking for more monitoring, etc. I think of the many times my concerns for Lucy were brushed off. The consequences of those doctors’ decisions still ripple through our family monthly, weekly, daily. Yet the doctors had no consequences and even more disappointing, they didn’t learn from their experience with Lucy. That large teaching hospital still has not updated their monitoring/treatment protocols and they do not offer plasmapheresis and IVIG to patients in similar situations. This is why I have to drive four hours each way just to get an ultrasound every week. Why, after seven years, has there been no improvement? Even after such a catastrophic loss? I think the answer is partially rooted in the fact that the people who made those decisions are not feeling the consequences of their choices. I am. Josh is. Liam, Asher, Nora and Callum are. Lucy got the brunt of it. The other patients who don’t get the best care are feeling the consequences. And it is hard for me to process that emotionally right now. Lucy was worth the extra effort it would have taken for the MFMs to monitor and treat her HDFN correctly. Her life was worth it. I wish they had felt the same way. This baby is getting all of the right care, the right monitoring and the right treatment from an MFM who sees how valuable his life is. It’s beautiful and it’s heartbreaking because Lucy deserved the same treatment that her siblings received and she deserved the same chance at life that they got.

This weekend we had some pretty bad storms in Alabama and there was a possibility of tornadoes in our area. We watched the weather man (James Spann) all day and were ready when the tornado siren went off. All the kids had their helmets on and were in the bathtub within a minute of the tornado warning being issued. Thankfully we were unaffected by the tornado and everyone is safe. James Spann kept repeating a phrase throughout the day that I have not been able to get out of my head. When there were signs of a rotation on radar but they weren’t 100% positive that there was a tornado down, they would still issue a tornado warning for the area. He said, “It’s always best to take the course of least regret.” The phrase resonates deeply with me. So often I see MFMs go the opposite route and provide the patient with the least amount of monitoring possible. But why? What if every single MFM decided to take the course of least regret? If the literature says to scan every 1-2 weeks, then do a scan every week to be safe. Check titers often, check on the baby often. If the MoMs are trending high, then rescan in a few days. Take the course of least regret because the stakes are so high. Lives hang in the balance and the consequences of the doctor’s monitoring and treatment decisions can affect patients for years and decades to come.

Next week will be hard emotionally for me as well since Lucy died at 19 weeks, so I am bracing myself for that. But I am so incredibly thankful for my healthy boy and my amazing doctor who provides such thorough care for us. He leaves no room for regret, regardless of the outcome of this pregnancy.

We checked my titer again this week and unfortunately it has gone from 128 a couple of weeks ago to 512. I will be doing three rounds of plasmapheresis next week in Atlanta and a double loading dose of IVIG right afterwards to try and bring my titer down. Our goal is to help this baby make it as far as possible before needing an IUT. I’m really hoping we can get to viability (22-25 weeks) before needing intervention. Please continue praying for our boy and for our care providers. I hope everyone is staying safe. I will update the blog after next week’s ultrasound.

 

16 Week Update and Gender Reveal

We had another great scan yesterday at 16 weeks and 1 day, but first, the gender reveal! The video is too long to upload here on my blog so if you want to watch it you can see it on my Facebook page (Bethany Weathersby.) For anyone who just wants to know now without watching the video, we are having our fourth BOY. We were shocked when we heard we were having another boy but now we are feeling really excited about him. Of course, my heart aches for Nora, who will never have a sister here on earth. The news of another brother did break open my Lucy wound again (which happens often) so that has been hard. But we are also very thankful to be given another baby to love and parent. Sometimes I feel like the luckiest person in the world. My mom (who has five kids as well) often says she feels like the richest person in the world when she thinks about her kids and grandkids, and that’s how I’ve been feeling lately- the luckiest, richest person in the world to be given five children.

Yesterday baby’s PSV was consistently 22, which is lower than last week! Using the PSV and the gestational age, that can be calculated to a 1.04 MoM, which is normal and does not indicate anemia. Baby’s heart function looked great, he was super active and of course, there were no signs of fetal hydrops or fluid build up anywhere. Dr. Trevett checked the cord and placenta placement again and it is in the perfect spot for an IUT when it is time to do one. It was kind of hard to get a good picture of baby boy since he was so active and kept kicking and flipping all over the place. Here are a couple of pictures from the ultrasound yesterday.

Dr. Trevett also checked my antibody titer again yesterday. Usually once the titer is critical (4 for Kell and 16 for the other antibodies) there isn’t much need to continue checking the titer since the baby is being checked every week with MCA scans (or SHOULD be checked every week with MCA scans.) Remember, the titer just tells you “how many sharks are in the water with your baby” and the MCA scan tells you “whether your baby is being attacked by the sharks and to what extent.” In my case my antibodies are more aggressive than most, and my titer was VERY high at the beginning of the pregnancy. This is why I have been doing plasmapheresis and IVIG to protect the baby until he is far enough along to receive intrauterine blood transfusions. My titer at the beginning of the pregnancy was 2,048 and after three rounds of plasmapheresis my titer was 128. Three weeks later they checked my titer again and it was 256. The reason they are keeping an eye on my titer is because if it reaches 1,024 or above we will do more plasmapheresis treatments to try to bring it down. Yesterday my titer was back down to 128, which is amazing news! I don’t know why it went down but as Dr. Moise said, no need to argue with success. I was expecting it to be much higher but for some reason it isn’t bouncing back up to the thousands.

Dr. Trevett and I also discussed Coronavirus scenarios (at my request, of course) and he said that if I get the Coronavirus, he will continue to treat me as usual, just completely covered in protective gear from head to toe. If he gets the Coronavirus he has to be isolated and won’t be able to treat me. In that case, I will drive to Houston and be treated by Dr. Moise. Hopefully we will be able to avoid the virus but it still makes me feel more confident just having a tentative plan in place.

Since my appointment yesterday I have finally allowed myself to hope that we might actually be able to bring this baby home alive one day. I’m only 16 weeks, so we still have a long way to go, but each week that passes without intervention is such a gift. Each week brings baby’s survival rate up a little more. Again, I feel like the luckiest, richest person in the world to be given this chance to have five children, a lifelong dream of mine. I thought my dream of a big family was destroyed along with Lucy in 2013, but somehow here I am pregnant again with a healthy baby boy. My next scan is on Monday at 17 weeks and 1 day. I will update the blog afterwards! Thanks so much for encouraging us and praying for our baby boy.

Baby Weathersby

We have some big news to share with everybody (although most of you probably already know!) I’m pregnant and due in September on Callum’s third birthday. We are so excited about this baby and we love him/her so much already.

Our journey to this baby has been different from any of our previous babies. With the first four babies it was a given that we would try for another baby in the future. Even when I was pregnant with Nora I thought that if she survived we would be open to another baby once she was a year or two old. But after Callum was born we really felt like we were done and we had pushed our luck far enough. Even though we had previously wanted five kids, we were tired of being in survival mode and we felt like we could be complete with our four living children. After Callum was born Josh and I prayed that God would give us peace about being finished growing our family and that He would give us confidence as we moved into this new phase of life- out of the family growing phase into the next phase, whatever that looked like. But as we prayed that prayer over and over again God started to do the opposite. He didn’t give us peace about being done. In fact one night I dreamed about my child (whose name meant “bringer of good news”) and I could not get this kid out of my head. I brushed it off for a while and finally told Josh about the dream. He said, “We absolutely are not having any more babies.” I agreed with him. But slowly and steadily God continued to bring this baby to mind, this one last baby, and I felt like He was asking me to step out in faith. So I told God that if He wanted us to try again, then He would have to convince Josh. We found out that the M281 trial was open and accepting patients around that time. It looked like I might qualify for the trial so the possibility of having an intervention free pregnancy and a healthy baby seemed quite intoxicating.

To make a long story short, Josh and I discussed this baby for years and we discussed the idea with our doctors in all three states (Georgia, Alabama, Texas.) Josh decided he was ready to try for our last baby, but it was still scary to take the leap. We know that just because God calls us to do something, it doesn’t mean it will be easy, it will work out the way we want it to or that it won’t involve suffering. But we also know that the greatest miracles and some of the sweetest gifts God has ever given us started with a step of faith. We know from experience that our life story will be so much better if we let God write it. His plans for us are so far beyond what we could ever imagine for ourselves.

Ephesians 3:20 Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to Him be the glory 

When making these pivotal life decisions it always helps me to go back to the question, “What is my goal/purpose in life?” Is it to be comfortable, financially stable and safe? Is my goal to please others around me? If it was I certainly wouldn’t be pregnant with this baby right now. No, those are not our main goals and those things will not bring us fulfillment. My goal is to know God, enjoy Him, obey Him and bring Him glory with my life; to invest in others and love them well. I don’t always accomplish these goals obviously (I am selfish and sinful at the core) but I WANT to. And when I pursue these things I find true fulfillment. I’m reminded yet again how thankful I am to have a husband who shares the same goals.

So far, this journey God has brought us on has been one of stress, suffering, growth and joy. We started trying for a baby last year and we had a very early miscarriage in July, then a 7 week miscarriage in November. At the same time I was trying to start The Allo Hope Foundation which was another leap of faith that God called me to years before. I will save that story for a different blog post. But this past year has been really hard for our family, even though we are doing what we feel God is calling us to. On New Year’s Day I found out I was pregnant again and I had very little hope that the pregnancy would progress past the first trimester. This fear had nothing to do with my anti-Kell antibodies since they can’t hurt the baby in the first trimester. I was worried because I’ve had four early miscarriages in the past and I turned 39 in January, so my odds of having a first trimester miscarriage were high. I tried not to even think about the baby (basically impossible) but week after week and ultrasound after ultrasound, we have been pleasantly surprised by a healthy thriving baby. So far I’ve had 7 ultrasounds and every time I see my baby my heart opens a little more and my love for this tiny person grows.

I am now a day shy of 14 weeks pregnant. Unfortunatley, the M281 trial was not the right treatment path for us for a couple of reasons. We discovered at the beginning of the pregnancy that my Kell titer was higher than it has ever been, 2,048. With Lucy it was 1,024. So this made us very nervous and we felt uneasy about starting treatment as late as 14 weeks. The M281 trial starts the drug infusions at 14 weeks if the baby is Kell positive. I also found out later that my measles immunity test was 1 point below immune, so that disqualified me from participating in the trial. I had checked my measles immunity before attempting pregnancy and I was definitely over the threshold and was considered immune. For some unknown reason that number dropped between then and when I became pregnant with this baby. Thankfully we went into this pregnancy knowing that if the trial wasn’t the right treatment path for us we could use the same treatment plan that we used with Nora and Callum. I started plasmapheresis and IVIG at 11 weeks. After the three rounds of plasmapheresis my titer had dropped from 2,048 to 128. That is a HUGE drop! We were all very impressed with how well those treatments worked. We will test my titer again on Monday to see how high it is now. I fully expect it to be back in the thousands again, but maybe I will be pleasantly surprised. After a double loading dose of IVIG right after my three rounds of plasmapheresis were done, I am now receiving IVIG every week to try to protect the baby from my antibodies.

We still don’t know if our baby is Kell positive or Kell negative. Each baby has a 50% chance of being Kell positive/negative because Josh is heterozygous for the Kell antigen. However, we know that our last 4 babies, possibly all 5 have been Kell positive. Asher, Lucy, Nora and Callum are all Kell positive and we have never had Liam tested so we aren’t sure about him. On Monday, Josh and I will have our blood drawn in Atlanta and Dr. Trevett will have it sent to The Netherlands to have the cell free dna test done. Then we should hear within a week or two whether the baby is Kell positive or Kell negative. We did the regular NIPT blood test a couple of weeks ago to find out gender and have genetic testing and we got those results back. Thankfully the baby tested negative for the major genetic disorders (trisomies) and we will share baby’s gender with everyone once we know baby’s antigen results.

On Monday I will have my first MCA scan done by Dr. Trevett in Atlanta. Baby will be 14 weeks and 1 day and we are praying that (s)he won’t already be anemic. Please pray with us for a healthy baby and no signs of anemia. These weeks (13, 14, 15) are the most dangerous for the baby since the antibodies could possibly affect him/her and there is very little that can be done for an anemic baby at 13-15 weeks. Intrauterine blood transfusions (intraperitoneal) are possible at 15 weeks but they are very dangerous and the survival rate isn’t great. I will update everyone as soon as we have our ultrasound on Monday. We are thankful to have you along for the ride!

 

Lucy’s Stocking

Lucy's stocking

I was supposed to write this post several days ago to share The Allo Hope Foundation’s very first fundraiser ever, “Lucy’s Stocking.” Of course I put it off until the last minute. Today is Giving Tuesday and Facebook will match any donation sent to the Allo Hope Foundation on Facebook. But instead of focusing on asking for your donations, I just need to write about the incredible support I have been shown today.

I have actually been in tears on and off all day for two very different reasons. The first reason is that so many friends, family members, antibody moms and even strangers have shared our fundraiser and contributed to “Lucy’s Stocking.” It encourages me to tears because so much of this journey over the past few years has felt so isolating. Going through my pregnancy with Lucy and trying to learn how to advocate for her on my own was extremely difficult and isolating. The hard work of grieving a lost child is also something only I can do myself. Neither Josh nor my friends/family can do it for me. The loneliness of missing her in all the quiet moments that nobody else notices is overwhelming sometimes. It feels like nobody else sees the empty places where she should be.

Maternal alloimmunization is a disorder that is often overlooked and rarely noticed by the medical community, as many of you already know. There is a relative lack of funding and research compared to more well-known medical conditions. Even our babies who are attacked by our antibodies and struggling with HDFN are literally out of sight while battling for their lives in utero. And it feels like our babies aren’t always “seen” by our doctors either, especially when we have to convince them to provide the right medical treatment for our children.

Trying to help other families struggling with alloimmunization and HDFN can also feel isolating. Of course there are many other women who are helping too, but it’s devastating when I try my best to help another woman keep her baby safe and her baby dies. I grieve for her baby mostly behind the scenes as I go about my day, cooking dinner, wiping messy faces, preparing an English lesson but still mourning for this little life that has been cut short. So, in many ways this journey has felt like an isolating one, and sometimes the process of starting this nonprofit organization has felt like an uphill battle. Time and time again I have thought, “I am not equipped for this, I have too many faults, I am inadequate.”

But today I have seen the flood of support from so many people through our first fundraiser and it feels like I’m not actually isolated at all. I’m supported, I’m encouraged and I’m not alone in this fight for better medical care. Maybe our babies really are seen and the value of their lives is not missed. Thank you to everyone who has shown up for us and reminded us that we are not alone. We are not isolated or overlooked.

The other reason I have been crying on and off today is because I got yet another message this morning from someone I care deeply about that said, “There was no heartbeat on the ultrasound today.” Devastated. Flooded with grief for this family. Still in disbelief. Motivated to keep working and growing The Allo Hope Foundation so this doesn’t happen again.

If you would like to read about Lucy’s Stocking, you can find our fundraiser on Facebook at: https://www.facebook.com/AlloHopeFoundation/posts/123222952468227 or if you aren’t on Facebook you can read about our fundraiser on Mighty Cause here: https://givingtuesday.mightycause.com/story/Allohope

Or if you want to donate directly you can do that here:

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The Allo Hope Foundation

I hope everyone has had a wonderful Thanksgiving week so far. It has been way too long since I’ve updated the blog!  Nora celebrated her fourth birthday in July and Callum celebrated his second birthday in September. They are growing and thriving and lighting up the world around them. We still can’t believe they are both here safe and sound after we were told we could never have any more children after Lucy died.

I wish so desperately that every woman with these antibodies could have the phenomenal care I received during my pregnancies with Nora and Callum. Unfortunately, it is fare more common to see women receive inadequate care during their alloimmunized pregnancies than the proactive care I had with my last two pregnancies. Nora and Callum are my constant reminders of how these pregnancies can and should turn out if treated properly. For years I have wanted to do something more to fight this disease and prevent other parents from experiencing the trauma and devastation that we have endured. With the encouragement of family, friends, doctors and fellow antibody parents, I decided about a year ago that I would take the leap and try to start a non-profit organization to help support families facing alloimmunization (antibodies during pregnancy) and to help protect babies threatened by HDFN (hemolytic disease of the fetus and newborn.) I have teamed up with some wonderful people and we are so excited to announce that The Allo Hope Foundation is now an official 501(c)(3) non-profit organization.

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Our main goal is to prevent harm, stillbirth and infant death caused by maternal alloimmunization and HDFN. We are dedicated to providing patient advocacy, support and education while promoting research and improving healthcare practices for the condition.

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We are in the start up/launch phase at the moment, raising funds and forming our patient advisory board and medical advisory board. Our first priority is to raise funds and create a website where patients, their families and care providers can find information, resources and support. The Allo Hope website will also allow us to reach our global alloimmunization and HDFN community and bring more awareness to the disease. Come and follow us on Facebook and Instagram and stay tuned for ways that you can help! Thank you to everyone who has prayed for me and encouraged me on this journey for the past seven years, I don’t know where I would be without you.

M281

*Several years ago I wrote a blog post called Anti-Kell Antibodies: Dr. Moise’s New Treatment and I promised to update the blog when there were new developments. This is the update 3 years in the making!

*Disclaimer: I am not a medical professional. This is what I understand about M281 and the phase 2 trial currently underway.

I like to think in pictures and stories, so I’ll share the scenario that comes to mind when I think of M281, a new drug currently being tested to treat severe alloimmunization and HDFN in pregnancy. Imagine a busy train track with trains coming and going every hour or so. Now imagine a toddler walking around exploring the train tracks, picking up rocks, stumbling and righting himself, following a passing airplane overhead with wide eyes. I’ll use a picture of my 20 month old, Callum just for a cute visual.

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You hear a train approaching in the distance. What is your first reaction? Go get that baby off the tracks, right? It seems logical to protect the toddler from being hurt or killed before the injury happens. What if someone nearby said, “Oh, it’s fine. Let him do his thing and if he gets hit by the train we have medical professionals who can treat his wounds. There is a possibility of death but hopefully we can save him after he gets hit by the train.” No one in their right mind would stand by and let that scenario play out. Why not remove the baby from the area or at least put up a fence or other barrier to keep the baby away from the train track?

Sometimes it feels like the methods used at the moment to treat alloimmunization during pregnancy/HDFN are similar to the train track scenario. Instead of protecting the baby from the antibodies to begin with, the protocol is to wait until the baby is attacked by the antibodies and becomes anemic before stepping in to help. But this way of treating the disease has proven dangerous far too many times. Sometimes the baby dies before the doctors detect the fetal anemia or the anemia is so severe by the time they discover it that the baby can’t be saved (like in Lucy’s case.) Sometimes the fetal anemia is discovered but the doctors wait too long to do a transfusion and the baby dies. There can be complications from the IUT which can lead to premature delivery or death. Another complication is hyperbilirubinemia after birth which can lead to permanent brain damage if not treated quickly and aggressively. All of these tragedies could be avoided if we could figure out a way to “put up a fence” between the antibodies and the baby BEFORE the baby is attacked by the antibodies. What if there was a way to protect the baby from the injury in the first place instead of trying to treat the wounds afterwards? Well, Dr. Moise and some other brilliant people might have figured it out!

M281 is a drug that can potentially block a mother’s antibodies from going through the placenta to her baby during pregnancy. If the antibodies don’t get to the baby then there should be no fetal anemia, no IUTs, no fetal hydrops, no hyperbilirubinemia after birth, no death. This drug is still in the trial phase but it looks very promising and I am so excited to see how it might save lives in the future.

Since my original blog post in 2016, researchers have done drug studies on pregnant primates and non-pregnant humans to test for safety and efficacy of M281. They have studied the drug in human placentas in the lab too. To learn more about these studies you can check out these links:

Human Ex Vivo Placental Perfusion Model:

transplacentalarticle.pdf

http://ir.momentapharma.com/static-files/71c4376f-4984-419e-a0b1-430326783e99

First Human Study:

firstinhuman.pdf

Right now the phase 2 trial for pregnant women is open and they are accepting 15 trial participants worldwide. This trial is the first one to test M281 on pregnant women with severe HDFN/alloimmunization. Here is the link to the study details: https://clinicaltrials.gov/ct2/show/NCT03842189?cond=m281&rank=3

I wanted to answer some of the most common questions I have received about M281 here so that the information is easy to find. If you have other questions about the new treatment or about the drug trial you can come join our M281 Discussion Group on Facebook or you can email me at bethanysk55@yahoo.com or just ask your question here in the comments section. If you have specific questions about the trial here is the contact information for Momenta Pharmaceuticals:

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03842189

 Momenta General Queries +1 617-491-9700 ClinicalTrialInfo@momentapharma.com

Here are some of the most commonly asked questions:

How does the drug protect the baby from the antibodies?

M281 works in two ways to protect baby from the mother’s antibodies while in the womb. It lowers the mother’s overall antibody count and it blocks the antibodies from getting through the placenta to the baby.

How is the drug administered?

M281 is given via IV infusion once every week and the infusion takes about two hours.

Does the drug work for any antibody or just for certain ones?

The drug trial is only for women with anti-D or anti-Kell antibodies since those two are usually the most aggressive ones when it comes to HDFN and the study wants to specifically target the worst case scenarios before declaring that it works. But the drug does block all red cell antibodies from going through the placenta so if it does get approved and go on the market it will work for anyone with a red cell antibody.

Does the drug cause birth defects or dangerous side effects?

This is part of what they are trying to determine with the phase 2 trial on pregnant women but the previous studies did not find any evidence of birth defects or major negative side effects. The drug will be administered once the woman is in her second trimester so that alone is safer in regards to birth defects since those typically happen in the first trimester. Also, previous studies show little to no transfer of the drug to the fetus.

How is M281 different from IVIG?

If you read my post about Titers, Antigens and Sharks you might remember that the “shark cage” was IVIG which can be used in severe cases to protect the baby in utero from the antibodies early in pregnancy before IUTs are possible. IVIG stands for “intravenous immunoglobulin” and it is made up of thousands of people’s antibodies concentrated into a liquid given intravenously. Doctors still aren’t sure exactly how IVIG works to protect the baby but most doctors think the IVIG protects the baby in one or more of these three ways:

  1. It lowers the titer so that there are fewer antibodies present in the mother’s blood to attack the baby.
  2. It slows/prevents the antibodies from going through the placenta and attacking the baby’s red blood cells.
  3. It helps the baby fight off the antibodies that are attacking his red blood cells.

IVIG doesn’t completely block the antibodies from getting to the baby like M281 could but it does delay the attack. With my second and third sensitized pregnancies I had plasmapheresis and IVIG treatments which delayed the antibodies’ attack and saved my babies’ lives. Even with those life saving treatments Nora had seven transfusions total and Callum had six transfusions total as well as other interventions and medications, NICU, etc. The antibodies still wreaked havoc on my babies both in the womb and in the weeks following birth. IVIG is also very expensive and most countries will not approve it as a treatment for our disorder. Another down side of IVIG is that it usually comes with some pretty severe side effects for the mother. I had debilitating migraines, vomiting, rapid heart rate, difficulty breathing, back pain, muscle weakness, eczema and more. I also had to take more medications (mostly class C drugs for pregnancy) to manage the side effects. For the people who were given M281 in the previous human studies (non-pregnant) there were no significant side effects.

When will the drug be ready for public use?

I’m not sure if or when the drug will be available to the public. The next step is to complete the phase 2 trial which means following 15 women through their pregnancies and for six months after birth. Only once the drug is deemed effective and safe will they consider making it available to the public. Right now the estimated trial completion date is 2022.

If the drug blocks all maternal antibodies from going through the placenta, how does the baby get the good antibodies from the mother? Is the baby born without an immune system?

The drug does block even the “good” maternal antibodies from getting to the baby but the doctors have a solution for this. The plan is to induce labor/deliver at 37 weeks, so at 35 weeks they will stop the weekly M281 infusions to allow maternal IgG antibodies to transfer to the baby. The woman will receive IVIG to boost her antibody count (NOT her red cell antibody count though.) During the two weeks without the M281 infusions the MFMs will watch baby very closely to make sure he isn’t getting anemic. If baby is showing signs of anemia they will deliver. The baby will get mom’s antibodies for two weeks before birth. Once baby is born the doctor will test the cord blood to make sure baby’s IgG antibody levels are high enough. If they aren’t, they will give baby IVIG infusions to boost the antibody count and baby will have an efficient immune system.

Who can be included in the trial?

The doctors have very specific requirements for trial participants, all for good reasons. If you are interested in joining the study, contact your OB or MFM and have them contact Momenta Pharmaceuticals at +1 617-491-9700 or have them email Dr. Ken Moise at kenneth.j.moise@uth.tmc.edu  Here are SOME of the requirements for trial participants:

  • Age >18
  • English speaking
  • Singleton pregnancy
  • Gestation 8-13 weeks
  • Anti-D alloimmunization with a titer of at least 32 or Kell with a titer of at least 4.
  • Previous pregnancy with one of the following at 24 weeks or earlier- severe anemia at time of transfusion with hemoglobin less than 0.55, Hydrops Fetalis with elevated MCA over 1.5 MoM, fetal demise with pathology of the placenta/fetus consistent with severe HDFN (need records)
  • Evidence of immunity to certain diseases
  • No history of a clinically significant medical complication that would jeopardize the safety of the patient or her fetus (ex: pre-eclampsia, pregnancy induced hypertension, drug or alcohol abuse, etc.)

I will try to keep everyone updated on the new drug’s progress here on the blog and definitely on the M281 Discussion Group on Facebook so come join us there if you’re interested in following along!

 

Fetal Center Reunion

For the first time in my life, I have a 19 month old toddler and I am not pregnant. With all four of my other children by the time they were one and a half I was already pregnant with their younger sibling. As Callum grows it feels bizarre not to be growing as well with his younger sibling inside. There is a little bit of sadness but mostly a delicious freedom and ease to life, yes even with four kids. To be able to chase Callum or deal with a toddler melt down without fighting back nausea is such a relief. It makes this stage so much easier as a parent. I am enjoying my four kids so much and savoring the absence of emergency in our lives. I love having my body all to myself and being able to sleep through most nights without tending to a baby.

Our baby Callum is doing well and growing so fast. He was a late walker like Nora, but their personalities are more laid back so I’m guessing that is the reason they walked later than their big brothers. Liam walked at 11 months, Asher walked at 8-9 months, Nora walked at 14 months and Callum was 16 months. It’s fun to have all four kids now on their feet and somewhat independent. I am loving this stage of life with the chaos and the sweetness and the hilarity of young children.

In April we drove to Houston for the Fetal Center Reunion and it was a quick but wonderful trip. The last time we were in Houston was when Nora was a newborn. She was only about 4 days old when Josh and I woke up in the early morning hours in 2015, packed up our room at the Ronald McDonald House and drove out of the city towards Alabama. As we left, the sun was coming up and I looked in my rear view mirror at the city doused in morning light and I cried happy tears of disbelief. We had done it. God had done it. Nora was alive and I felt such a surge of love for the city of Houston, for all the miraculous things that had taken place there. So now to be back in Houston with bubbly Nora who never stopped talking the entire trip was very surreal and special. We stayed at an Air B&B in the medical district and visited some of our favorite places in the area. Again, it was surreal to be in these places where I had experienced such emotional turmoil four years prior, completely desperate for my baby girl’s survival. Now here she was playing with her brothers in the same spot, completely healthy and very much alive. I will never get over the miracle of her life and I will never stop telling of the wondrous things God did for us. He is such a faithful loving God, patient and kind and trustworthy. I truly have no good apart from Him.

Here are some pictures of Nora playing in the park in front of Children’s Memorial Hermann Hospital where she was born:

At the Fetal Center Reunion we got to see Dr. Moise and many of the other doctors and nurses who treated us during my pregnancy. I saw some of the women who coordinated my care during my pregnancy with Nora and some of the nurses and ultrasound technicians who monitored Nora every week in the womb and assisted during her intrauterine blood transfusions. All of these amazing people worked together to save Nora’s life and to see them all together again was so special to me. My gratitude overflowed. I’m actually tearing up right now typing this because these people mean so much to our family. It really did feel like a family reunion. They were all so sweet and happy to see Nora. Nora was excited to finally “meet” Dr. Moise (even though he had already met her when she was a baby obviously) and Callum loved Dr. Moise too even though he had no idea who he was. I loved seeing Callum with his namesake and Nora with her hero.

I also got to finally meet one of my most dearly loved fellow “ISO moms” Brittany Pineda. She reached out to me several years ago when she was pregnant with her son, Kristian, in her first known ISO pregnancy (anti-D.) I grieved and still grieve with her over the loss of her baby Kristian after his first IUT and encouraged her to try again for her rainbow baby. Long story short, she traveled to Houston for her treatment with her second son and Dr. Moise performed his earliest IUT on Brittany’s baby at 15 weeks. I think that week shaved about ten years off my life I was so anxious. Her miracle baby, Mikah Kristian Joseph was born after 9 IUTs and is now a healthy toddler. Brittany has always been such an inspiration to me and she encouraged me throughout my pregnancy with Callum too. Now our miracle boys share a middle name, Joseph, after our hero Dr. Moise. You can read more about Brittany’s story here in the Fetal Center Newsletter fetalnewsletter-1.pdf

After all of our history together, Brittany and I had never met in person outside of our cellphones. It was amazing to see her and her family face to face finally! Of course we both had to spend most of our time chasing after our toddlers but we got a little conversation in here and there. Here are a few pictures of our families together with Dr. Moise and at the Fetal Center Reunion:

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Callum kept waving at Dr. Moise

Rainbow babies Nora and Mikah, 14 IUTs between the two of them at the Fetal Center:

It was really hard to get a picture of these two together since they NEVER stopped moving! Our boys, Callum Joseph Thomas and Mikah Kristian Joseph:

And of course our favorite part of Houston is always the Korean food:

 

Titers, Antigens and Sharks

Anti-Kell antibodies, along with the other red cell antibodies during pregnancy, can be very confusing and scary, especially when you are newly diagnosed and trying to figure out what is going on. Since the disorder is very rare, medical professionals don’t encounter it often and sometimes have to rely on their memory of what they learned about it in med school. Some of the most common misconceptions revolve around the antigen blood results, titers and MCA scans. I have been trying for years to come up with an analogy to easily illustrate how these things work together and I have finally found a pretty good one. Obviously it isn’t perfect but it’s the clearest one I’ve been able to come up with to represent these specifics facts. In this post I will be using anti-Kell antibodies as the illustration but the analogy can also be applied to the other red cell antibodies such as E, D, c, Jka, Jkb, Fya, Fyb, etc. So, here is my shark analogy:

gray_reef_shark_fish

The sharks represent the mother’s antibodies. They have the potential to be very dangerous, they are designed to attack and destroy. But this doesn’t necessarily mean that the baby will be attacked by the shark. Many of us have been in the ocean with sharks and not been attacked by sharks. Just because they are there it doesn’t mean that they will attack. For most people, the thought of sharks is terrifying and the thought of these antibodies possibly harming our babies is terrifying as well.

Let’s talk about the antigen first. The antigen is hereditary and is passed down from a parent. It isn’t dangerous, just a protein in your blood, similar to a blood type. If the baby has the antigen, passed down from his father, then that puts the baby in the ocean with the sharks. Still not necessarily getting attacked by the sharks but in the water and possibly in danger. If the baby did not get the antigen from the father, then the baby is on the beach, far back from the shoreline, playing peacefully in the sand or maybe taking a nap. The sharks are still in the water with all their muscle and sharp teeth, but the baby is way up on the land, completely out of harms way.

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Ironic picture of my baby who certainly wasn’t “safe on the beach” during my pregnancy

This is why it’s important to have the baby’s father tested for the Kell antigen. It’s obviously necessary to know whether your baby is in the water with the sharks or up on the beach playing peacefully in the sand. Many times I’ve been approached by nervous parents who tell me that the nurse or even the MFM has told them the antigen status of the father has no effect on the baby. Or they have been told, after the father’s test showed he is negative for the Kell antigen, that the baby could still be attacked by the mother’s antibodies. This is simply not true. There is no way a shark can attack a baby who is way back away from the water, on the sand. And there is no possible way for the antibodies to hurt your baby if the baby is Kell antigen negative. By the way, the mother is always Kell antigen negative since it is impossible to produce anti-Kell antibodies if you have the Kell antigen. This is why we always focus on the father’s Kell antigen status. If he is negative for the antigen we know that two negative parents cannot possibly pass down a gene to their baby that they themselves don’t have.

Ok, so if your baby’s Daddy is Kell antigen negative, your baby is safely playing on the beach and there is no need to worry about any sharks. If your baby’s Daddy is Kell antigen positive then it’s possible that your baby might be positive for the antigen as well. You can find out at 14 weeks by doing a non-invasive maternal blood test if your baby is Kell antigen positive or negative. The blood test can also be used to test for the E antigen and the c antigen. There is an even earlier maternal blood test to check the baby for the D antigen (rh.) For all other antibodies an amniocentesis can be done at 16 weeks to check baby for the antigen. So, what if my baby has the antigen? That means your baby is in the water with the sharks. In my analogy we are standing on the shoreline looking out at the ocean and the baby is under the water swimming around, much like they do in the womb. It’s very scary as a mother to know that your baby is under the water with the sharks and you can only gaze out anxiously at the surface of the water, unable to really check on the baby and see how he is doing.

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This is how it feels during a sensitized pregnancy. It is such a helpless, scary experience to know you can’t physically see or help your baby stay safe from the sharks. Thankfully, there are ways that our heroes, the medical community, can check on our babies and protect them from the sharks.

First, let’s talk about the titer. Your titer shows the amount of antibodies that are in your blood. The titer does not tell us anything about how our baby is doing under the water. Is baby being attacked? Is he struggling? Is he ok? Titer does not answer any of those questions. The only question the titer answers is “How many sharks are in the water with my baby?” Through years of research, doctors have come up with a critical titer for each antibody. The critical titer says, “Once there are this many sharks in the water with your baby, your baby is actually in danger of being attacked.” For most antibodies the critical titer is 16 and for Kell the critical titer is 4. A recent study also showed that Kell in particular can affect the baby at any titer, even titers below the critical threshold. Regardless of the type of antibody, even with a low titer, there is still at least one shark down there swimming around with your baby. Titers are helpful though, because they give an idea of how closely the baby should be watched and whether baby needs a shark cage or not. Only the babies in the most dire circumstance need a shark cage, but I’ll get to that later.

So, a very high titer means there are a lot of sharks down there with your baby, which does raise the chances of baby being attacked. My titer was 1,024 and all of my babies happened to have the Kell antigen, so with each pregnancy I had a baby swimming in shark infested waters. As expected, all three of them were attacked at some point. If you have a low titer, there are fewer sharks and a lower chance of being attacked. But it is still important to be vigilant just like you would if your baby was swimming around in the ocean with a couple of sharks out there.

MCA scans measure how fast your baby’s blood is flowing through the middle cerebral artery in the brain. The MCA scan will give you a PSV number, which is the speed at which your baby’s blood is flowing and if it is too fast, the doctors can be pretty certain that your baby is anemic. The PSV number can be converted to an MoM using this calculator. An MoM above 1.5 signals an anemic baby that needs help. So in our analogy, the MCA scans are the doctor’s way of going down under the water and getting eyes on baby. In our analogy the MCA scan answers the questions, “Is my baby being attacked by the sharks?” “Is my baby’s life in danger?” “Does my baby need help fighting off the sharks?” The MCA scans answer the important questions that regular ultrasounds and titers cannot answer. The real life questions the MCA scan answers are: “Is my baby anemic?” “How anemic is my baby?” “Does my baby need intervention in order to survive?” “Is my baby’s life in danger?” This is why MCA scans are so important. Would you be satisfied just knowing how many sharks are in the water? Or would you also like to know exactly how your baby is doing in the water and whether your baby needs help or not? Women with critical titers should have weekly MCA scans starting between 16-18 weeks. Thankfully, fetal anemia is treatable, but only if it is caught in time.

So, what if my baby is being attacked by the “sharks” and is anemic? The doctors can help the baby fight off the sharks by giving the baby blood through an intrauterine blood transfusion which helps keep the baby safe. Another way that doctors keep the baby safe is by monitoring closely and removing them from the shark infested waters as soon as it is safer for baby to be on the outside.

What about the shark cage mentioned before? I’m using the shark cage to represent IVIG given early in pregnancy. IVIG is usually given (often only at the mother’s prompting) to women who have had a previous loss or previous severely affected pregnancy, since it is obvious that the mother’s antibodies are very aggressive in those cases. But I am also seeing IVIG being offered more frequently to women who have no previous loss or even previous severely affected pregnancy but have very high titers, usually 256 or 512 and above. I think (just my personal opinion here) every woman with titers in the hundreds or thousands should be encouraged to start IVIG treatments early in the pregnancy (10-12 weeks) to protect their baby from their antibodies. The IVIG does act like a shark cage in our analogy by protecting the baby from the sharks that are swimming all around. IVIG delays and/or prevents fetal anemia and it is a good way to keep the baby safe in extreme cases. The shark cage protects the baby from being attacked whereas the more common approach just watches and waits for the baby to be attacked before stepping in and trying to help the baby. With both Nora and Callum we used the IVIG “shark cage” to protect them while they were in shark infested waters and that is why they are alive today. My doctors refused to even consider the IVIG shark cage for Lucy and that is why she was attacked so early and so viciously.

So here is a quick recap of the shark analogy:

ANTIBODIES=SHARKS

TITER=NUMBER OF SHARKS IN THE WATER

ANTIGEN NEGATIVE=BABY IS ON THE LAND

ANTIGEN POSITIVE=BABY IS IN THE WATER

MCA SCAN=DOCTOR GOES UNDER THE WATER TO CHECK ON BABY

IVIG=SHARK CAGE

Hopefully my shark analogy has helped some of you and not confused you more. Thanks to my ISO Moms in our Facebook group for helping me clear up some of the details in my shark analogy!