NAIT Survivors
Written by Kelsey Givens
Hi Push Circle.
My name is Kelsey. I am the mom of 2 amazing individuals who are both Neonatal Alloimmune Thrombocytopenia (NAIT) survivors (more on this later).
In preparing ourselves to start a family, my husband, Cody, and I decided to do all the prenatal genetic testing a couple years prior to having kids. I'm a nurse and have seen too much of what can happen to infants. People can carry one antigen on their DNA for cystic fibrosis or muscular dystrophy, these are life long illnesses. If Cody and I both tested positive for the markers then our children could suffer from the disease. For us it was concerning and we would have looked at other ways to create a family. Thankfully, we came back all clear, or at least we thought so.
In the winter of 2015, Cody and I were excited to find out we were expecting our first child, who we lovingly referred to as peanut. I loved being pregnant, especially because I was still able to do the things I love, like playing soccer and softball, running, working out, riding my bike - many of which most OBGYN’s would put on their “don’t do” list. Fortunately for me, my doctor was very supportive of keeping up my active lifestyle and it was just what I needed for my mental health. Otherwise, my pregnancy was uneventful and things progressed as expected. Even in utero, our first little baby was an active little one.
Going into labor, I still had no complications or high-risk factors. We chose to be induced, though not totally normal it turned out to be exactly what we needed. Here’s what I remember most in a nutshell: Pitocin is a b!t@H, I had lots of back labor, the anesthesiologist missed an epidural and then gave me too strong of an epidural (it went all the way up to my lips, upper lips not lower lips ;) ). After 17 hrs with a max dilation of 8 cm my doctor basically didn’t give me a choice on the next step, a c-section. Looking back, I am so grateful that my doctor saw the whole situation and took control. As much as I wish I could have tried different positions to continue with labor, it could have led to a very different and sad outcome.
The c-section went perfectly and we welcomed Austin Wyatt Givens to the world on September 19th.
Austin was a cute baby, he fed well right away, and we got out of the hospital within 2 days. Then something completely unexpected happened and the whirlwind that ensued shook our world and shaped our next pregnancy.
Austin was circumcised at 4 days old because our doctor was going out of town, typically baby boys are circumcised within the first week after birth. It went as planned and Austin was looking like a healthy 4 day old, except he had a small bruise on his right cheek. I thought I had maybe clipped it with the car seat, but didn’t think much of it. Then, the night after his circumcision we noticed quarter size blood spots visible through his diaper, which is definitely not normal. He should have stopped bleeding on his own by that point.
We ended up back at the doctor’s office and after getting checked in, two pediatricians came into the room, it is a bad sign when two walk in.
Turns out his platelet count was at 5,000. Normal healthy people have platelet numbers of 150,000-400,000. Anything under 30,000 can cause brain bleeds. We were sent directly to the pediatric cancer and hematology clinic (side note, this is the clinic where I work as a nurse). Austin went in right away for a head ultrasound to make sure he had not suffered a brain bleed and then went to the pediatric floor for an infusion of donated platelets. Lucky for us he was able to keep his platelet numbers above 30,000 after the transfusion. For the next 2 months we did weekly blood draws to make sure he was creating his own platelets. Which he did (yeah!) and we finally got discharged from the clinic. Now, Austin is a healthy, crazy 6 1/2 year old who just finished kindergarten.
All of this is to say that Austin was born with a rare condition called Neonatal Alloimmune thrombocytopenia or NAIT for short. NAIT is when antigens on the platelets in the blood don’t match up between mom and dad. Most people have ab, aa or ba but Cody has aa and I have bb, so my body fights the baby's antigens on the platelets and destroys them. This condition is unknown with first births and if I had given birth to Austin vaginally, he could have had a massive brain bleed because of the pressure through the birth canal paired with very low platelet levels.
After Austin’s diagnosis we weren’t sure we wanted to have another child because the risk to the next child is even higher.
The mother's body will create more antibodies to attack the baby’s platelets, putting them at higher risk of low platelets and brain bleeds. When we talked with our OBGYN, she was so supportive and offered to be in touch with the high risk group of providers if we ever did decide to have a 2nd child.
Knowing all of this put me at high risk if we were to have baby number 2, we went back and forth. Should we chance it with a second or should we adopt? Despite a lot of back and forth, we decided to try again. We met with Maternal Fetal Medicine and a high risk group, to discuss treatment plans. I was also able to speak with the hematology providers in the clinic where I work. We were able to see how treatment plans have a high success rate, decreasing the chances of low platelet counts. After talking with my doctors, we also needed to feel support from our pediatrician. She sat with us and listened to our fears and created a plan for the next baby after they were born to monitor platelet levels. We felt reassured by all the different doctors, knowing they were on our team and supported our decision.
As soon as we found out we were pregnant with peanut number 2 we were sent to the high-risk group. Because of the high-risk nature of the pregnancy we had multiple providers, the OBGYN from my first birth and another, Dr. Cooper. Dr. Cooper was wonderful. In my first meeting with her I thought, “Wow, she knows what is going on!” She had extensive experience with NAIT and had just relocated to where we live in Boise (someone was looking down on us!).
Despite all the risk, the beginning of my second pregnancy with our daughter was great. Remember, I love being pregnant and it was pretty easy for me. I still skied every weekend, worked out, ran, biked and chased a 3 yr old. It was at the 20 week mark when things got a bit tougher.
To keep the baby safe in utero, I began what would ultimately be 17 immunoglobulin infusions. Immunoglobins helped prevent my body from destroying my babies’ platelets. Every week I would go into the clinic/office for 8 hours. Looking back I miss my infusion days. Minus the IV start, it was 8 hours of vital signs, medication slowly infusing, naps, and a lot of Hallmark movies.
Due to these weekly infusions, I developed hemolytic anemia, which means that I was destroying my own red blood cells in the process.
So lucky me, I got to have a blood transfusion on top of the weekly infusions. Not ideal. Within the 17 weeks of infusions I was also on a high dose of oral steroids. The steroids were added towards the end of pregnancy as another method to stop my body from attacking my baby.
It was through the support of both my OBGYNs that we made it to the 37 week mark, just what we wanted for the scheduled c-section. We met our second NAIT survivor, Olivia Marie Givens, on March 14th. She was tiny at 5 lb 3 oz and everything perfect. All the infusions had done their work and her platelet levels were over 100,000!
A baby’s tiny body can take up to 6 months to clear mom's antibodies, but Olivia kicked butt and only needed 3 weeks of blood draws! I loved being pregnant and was proud that I could handle the infusions. Once in a while I let my mind wander to the what if's. What if the treatment didn't work? What if she had a brain bleed and developed cerebral palsy? After her birth and we had her final labs back with the all clear from her pediatrician I do remember taking a long exhale of relief.
When it comes to NAITs, we are one of the lucky families.
We didn’t have any long term effects from NAIT. Some babies with NAIT can develop strokes, organ bleeds, and - the fear of all parents - death. Thankfully, we had amazing support from two fantastic doctors and now we’re a family of four that loves being outside playing at the parks, skiing, hiking, biking and playing with family.
The team I had was amazing. My doctors listened to us but were also assertive with decisions about treatment and birth plan to keep my babies and I safe. Despite having pregnancy brain fog, I had a gut feeling that something was not right with Austin’s pregnancy.
I listened to that gut feeling when deciding to be induced and then having a c-section, which likely saved his life.
Meeting with all the different doctors before our 2nd pregnancy allowed us to make informed decisions and have a plan in place ahead of time. I am all for planning. Asking questions and doing research gave me time to make sure insurance would cover my infusions and figure out scheduling.
Unfortunately, NAIT is not part of routine prenatal genetic testing, so there’s really no way to know about it ahead of time even if you get screened. If I learned anything from my experience, it’s that if something does not seem right listen to your gut.
