My baby’s life is in danger, my baby is KELL positive and this is our story – Mary & Keith Koller
Don’t know what having a KELL positive baby means? Then you are so lucky.
The best way to explain it is that it is a different type of blood type (but it is really an antigen).
If mom has KELL antigens and dad is NOT a KELL carrier – Then we have nothing to worry about.
If mom has KELL antigens and dad has ONE KELL gene, then there is a 50% chance our baby has KELL. If dad has TWO KELL genes, then there is 100% chance our baby has KELL.
While I have KELL in my bloodstream, I do not have the KELL gene, but Keith, the dad, has both KELL genes which means, our beautiful baby, Aryia, growing inside me is KELL positive. So, what does that mean?
My antibodies will attack our baby’s antibodies, possibly causing anemia, organ failure and even death. Death to the baby, Aryia, growing in me.
You can imagine what this is doing to our family emotionally and financially which is why I am asking for help.
But, let me start from the beginning.
Five years ago I was married with two children, Emilyn and Caden (now 11 and 9 respectively). My kids bring me more joy then I could ever describe. I never thought I would have more children. I felt like my life was complete. Five years ago my life was turned upside down when my husband had an affair with my best friend. Yes, my best friend. Their affair resulted in twin boys. I was shocked, upset, hurt, and angry. I tried to continue my marriage. I tried to help him create a relationship with his sons, but it just didn’t feel right anymore.
Six years ago I decided to be a surrogate mother for a couple in Missouri. I had two beautiful children, with very easy pregnancies and deliveries. I knew I could carry a child and hand him\her over to the parents, when I saw their joy. I wanted to give another parent the love I felt with my children so effortlessly. I flew there and met with their fertility doctor. We did in-vitro the next day, and 5 days later had a positive pregnancy test. For the most part we had a relatively normal pregnancy, until 32 weeks.
I got pre-eclampsia, and my blood pressure became dangerously high. I was admitted to the hospital, and we made a plan to deliver him. He was breech, so we decided a c-section was the best option. The surgery was successful and he did well. He was only 4 pounds! He went straight to the NICU and I went to recovery.
After the first few hours I started to hemorrhage. I was passing blood clots the size of grapefruits and couldn’t hold my head up anymore. I woke up to nurses and doctors hovering over me as I was being wheeled down the hall. I was being taken back into surgery to stop the bleeding. I was bleeding to death.
I needed a blood transfusion to replace all the blood I had lost from the surgery. I never once thought of the risks of a transfusion.
They are safe right? They test for aids, HIV, and other blood related diseases right? Yes! They do!
One of the things that is not tested is a KELL antigen. The best way to explain it is it’s a different blood type. The blood I received had KELL in it.
Only 9% of the population in The United States is a carrier of the KELL antigen, therefore it is not cost effective to test donor blood. It is also not a disease, or life threatening to the person receiving the donor blood. I didn’t even know I had it. I continued life and never thought about any lasting effects from the transfusion.
And I continued life as normal until I met Keith, my current husband, and we immediately clicked. We had so many different interests but had so much to talk about. He didn’t have any children, and he was never married, that was appealing to me, he didn’t have baggage, I had enough to spread around! We loved him! Me, the kids, my family, my friends, we all loved him! After 2 years of dating we decided I would go off birth control, and just let God handle our future. He wanted a baby of his own, and we knew we wanted to build on the family we already had together. I had NO idea I would be pregnant in 2 months! I was so excited, and scared! I mean Emilyn and Caden are already half grown, and I am starting over!
Then 7 months ago I found out I was pregnant! The happiness that comes with a new pregnancy is so overwhelming! I knew what I wanted! I was going to have an uneventful pregnancy, just like with my two older kiddos. I would try for a VBAC, and knew what to watch for now. I knew the warning signs of preeclampsia.
I eagerly went to the doctor for my first ultrasound and to start prenatal care. I had my first OB blood draw and continued on with life. Two days later I received a call from my doctor. I carried an antibody called KELL. Um OK? WTH? What is this? Is my baby going to die? Am I going to have to terminate? So many questions, where do I even start? We need to test the babies dad and see if he is a carrier of the gene. If he is not, nothing to worry about. “He is a carrier…..” Worst news ever. Now what?
We go to the maternal fetal medicine office every week for an ultrasound and check her brain, growth, organs, and fluid level. We started this process at 18 weeks, and we got used to going in, doing our regular thing, and leaving. At 27 weeks, baby Aryia is anemic, and needs a blood transfusion. We have to travel to University level hospital for this, and that is over 300 miles away!
Once there, we have a ton of testing to do. Ultrasounds, blood draws, questionnaires, doctors and nurses everywhere. Some risks of the procedure is fetal death and early delivery, but without the transfusion death is imminent. So here we are, and I head into the operating room. I am prepped for a c-section just in case something goes wrong, and we waste no time in getting her out. During this visit I am told we will do this every two weeks until she is born.
So now, we have had two transfusions. She is growing at a good rate and taking the transfusions well. I am scheduled to have another transfusion in a couple of days. We will decide then if the risks of pre-maturity continue to outweigh the risks of pre-maturity. I will be 34 weeks when her next transfusion is needed and we may opt to deliver her then, she will carry my antibodies for 3-6 months after birth and will most likely need transfusions after birth and a NICU stay.
The stress that comes with the risks of this is enough for any mother to deal with. Traveling 4 hours every two weeks, working a full time job, seeing three different doctors, and raising two kiddos while trying to keep them busy during summer is NOT an easy task. I am mentally, emotionally, and financially exhausted. Which is why I am seeking help at this time.