Thank you to everyone who prayed for my procedure a couple of days ago. The surgery went so much better than I ever could have imagined. It makes such a huge difference when you have good medical care and doctors you feel confident with. I now have a permacath just like I did with my last pregnancy and I have a port. Both have tubes going into my jugular, which just does not sound safe at all but they said they do it all the time. Here is a picture of the permacath and port:
The permacath will be used for my three plasmapheresis treatments and then will be removed. The port will be used for my IVIG infusions and will remain in as long as I am having treatments.
Before they did the surgery on Thursday they did an ultrasound to check on the baby and everything looked good. The baby is looking a lot more like a baby and less like a gummy bear and was moving his/her little arms and legs around. I think the baby is about the size of a strawberry now. The anesthesiologist did an amazing job of sedating me during the surgery and I slept through the entire thing. The last time I had the surgery in Alabama I was awake and felt everything, which was so traumatic. I was so incredibly impressed with all of the doctors and nurses at Northside Hospital in Atlanta. It is definitely worth the inconvenience of driving four hours and finding somewhere to stay to get the best medical care for me (and the baby.)
So, a lot of people have asked me what the risks are for this baby or what the survival rate is for the baby. We asked several doctors the same questions before we decided to try for another baby because we wanted to know just how high risk the pregnancy would be. There isn’t a simple answer but there is definitely hope. Obviously because of what happened to Lucy we know that my antibodies are very aggressive and if the baby is kell positive (50% chance) then my body will attack and try to kill the baby. But like I said, there is a lot of hope for this baby and here is why:
- My body responded well to the treatments we did with Nora so doctors think my body will respond the same way this time.
- Nora was born full term and healthy and is our daily reminder of how well the treatments worked.
- The baby has a 50% chance of getting my blood type (kell negative) and if (s)he does, it will be a normal pregnancy with no extra risks to the baby.
- We have an amazing team of doctors ready to treat me and the baby and Dr. Moise is ready for us in Houston in case the baby gets anemic early.
- We have the whole treatment plan already mapped out, no struggling with doctors to get the right monitoring or treatment.
- My titer before the pregnancy was 512 and during my pregnancies with Lucy and Nora my titer was 1,024. This means that my antibodies have probably not gotten any stronger over time.
- God has encouraged us over and over again regarding this baby and we trust Him.
We actually have no idea what this baby’s “survival rate” is because Lucy was given an 80% chance of surviving the pregnancy and Nora was given a 0% chance of surviving, so for us percentages don’t really mean that much.
Our main MFM is Dr. Thomas Trevett in Atlanta who was trained by Dr. Moise (from Houston.) Dr. Moise is collaborating with Dr.Trevett for my care and we are doing all of my initial treatments in Atlanta since it is much closer to Tuscaloosa than Houston. Our plan is:
- Port and permacath surgically placed at 9 weeks.
- Three plasmapheresis treatments done at 10 weeks (Monday, Wednesday, Friday.)
- Permacath will be removed after the last plasmapheresis treatment.
- First IVIG infusion done in the hospital the day following the last plasmapheresis treatment (Saturday) at 11 weeks.
- Second IVIG infusion done in hospital the next day (Sunday.)
- IVIG infusions will be done by a home care nurse at my house once a week from this point on.
- Maternal blood test to find out whether baby is kell positive or kell negative done at 14 weeks. They will send my blood to The Netherlands for the test and we should know the results about a week or two later.
- If baby is kell negative we will stop all treatments and remove my port. Baby is safe from my antibodies.
- If baby is kell positive we will continue the IVIG treatments and will start MCA scans (ultrasound to check baby for anemia) at 15 weeks and have the scans twice a week.
- If baby starts showing signs of anemia early (20 weeks or earlier) we will go to Houston to be treated by Dr. Moise.
- If baby gets anemic early Dr. Moise will do an intrauterine blood transfusion (IUT) and do them every 2-3 weeks until baby is born.
- If baby doesn’t get anemic until after 20 weeks or so, Dr. Trevett will probably handle the intrauterine blood transfusions (IUT) and do them every 2-3 weeks until baby is born.
- IVIG is stopped when baby has his/her first IUT.
- Phenobarbital is given the last 10 days before delivery to help baby process bilirubin after birth.
- I will be induced at 37-38 weeks if everything goes well.
Please pray with us that the baby is kell negative so I can have a normal second half of the pregnancy. The reason we have to start treatments before we know whether baby needs them is because the earliest we can find out baby’s blood type is 15 weeks. If we waited until 15 weeks to start treatments, and the baby ended up being kell positive, then the baby would probably die. Since the treatments are pretty safe for baby, it’s best to start them now to protect baby in case (s)he is kell positive. Then if baby is kell negative we can just stop all of the treatments.
Thank you again for all of the support and encouragement you have given us so far. For those of you who are new to the blog, here is a quick recap of why my pregnancies are high risk and why I have to be doing all of these treatments to save the baby:
Quick Recap of my Anti-Kell Antibodies:
My pregnancies with Liam and Asher were normal. Apparently, Josh has a red cell antigen (which is like a blood type) called kell, which is very rare but not something dangerous. All of our kids have a 50% chance of being kell positive like Josh or kell negative like me. Asher, our second son, was kell positive and when I gave birth to him some of his blood mixed in with mine (which is common during birth.) My body saw the “foreign” blood type as something dangerous so I reacted by producing anti-kell antibodies to destroy the kell positive blood. Anti-kell antibodies are dangerous but only to people with kell positive blood (so if anyone ever gave Asher, Nora or Josh a blood transfusion using my blood, my blood would destroy their blood and make them anemic.) Once someone makes these antibodies they will produce them for the rest of their life so I will always have anti-kell antibodies. We found out about all of this after we were pregnant with Lucy, our third child. I was treated at the only hospital with a team of MFMs in the whole state of Alabama in Birmingham and they are not experienced in treating this disorder. We didn’t know this at the time and were told it was the best hospital in the state so we should trust them. Because my antibodies are very aggressive and I was not given the right monitoring or treatment (even though I asked for it) our daughter Lucy died and was stillborn. My next baby was another kell positive girl and I made sure to receive the correct monitoring and treatment during that pregnancy (thank you Dr. Moise!) and Nora was born healthy in Houston, Texas a few hours shy of 38 weeks. She is a healthy one and a half year old now.
So what happens if my body attacks the baby? The way my antibodies hurt the baby is by making the baby anemic. An intrauterine blood transfusion can be done on the baby if (s)he gets anemic, but only after 15 weeks (at the earliest.) If the baby gets anemic earlier than that, there is nothing we can do to save the baby. The treatments I am starting in a couple days (plasmapheresis and IVIG) are done to hopefully protect the baby from my antibodies until the baby is big enough to receive a blood transfusion in the womb.
Good explanations friend. I am excited and praying along with you. You are so brave and so wise. What a strong and loving mommy your babies have!
Thank you! You are so sweet and such an encouragement to me
we did not have Kell but we had Rh positive and RH negative. so many changes since I worked in nursing. Mary, of course, knew all about it.
After I had my son (first pregnancy), I had to have blood transfusions due to an emergency D & C because of a large amount of blood loss. This of course altered my blood in ways I did not comprehend. The very blood that saved my life also affected my ability to give life. My daughter (second pregnancy) has the Kell antigen and my ratios got as high as 1:512. She truly is my miracle baby! She is a happy and successful three year old now. There were hardships during the pregnancy and I stayed positive in knowing my love for her is endless no matter the circumstance. Doctors warned me and one wanted me to terminate and I said absolutely NOT! I gave her every fighting chance out there from weekly blood draws to steroid shots, weekly ultrasounds, and C-section where they took her four weeks premature just in case. After she was born, we felt truly grateful and blessed because there wasn’t a need for NICU and also I didn’t need extra blood transfusions. I want to share my story with others in our situation to show there is a light at the end of the tunnel. Most of us did/do not know how our situation will turn out. I wish there was a foundation out there to do more research into the Kell antigen because so little is known. Due to the history and research of the RH negative antigen the end result being the Rhogam shot has saved lives including my niece and nephew. I am so happy for your post because it was a helpful tool back in 2013 that I am not the only one. Thank you and congrats on your new bundle of joy!!
Thank you for sharing your story! I am so thankful that your daughter is healthy and alive today! My guess is that she is kell negative (usually a 50/50 chance) and was not affected by your antibodies since she never got anemic and didn’t need interventions during pregnancy or NICU afterwards. And I agree, I wish there was more research on kell and I really wish doctors and MFMs were more educated on how to treat women with anti-kell antibodies.