Kiera and Craig Whitley
British Columbia
Canada

Kiera’s Unusual NAIT Story

My name is Kiera and my journey with Nait is slightly unique. I was diagnosed with a rare platelet type HPA-1b/1b prior to even being pregnant. This was only investigated due to my mother’s history of multiple late term pregnancy losses. In 2019 my sister was pregnant and was diagnosed with the same platelet type as our mom. Her hematologist asked if she had a sister, so I was tested and diagnosed prior to becoming pregnant, which is when I found out I have the same platelet type. They then tested my husband and put us in the 100% incompatible category. I will forever be grateful for this, as unfortunately this is not normal pregnancy prescreening bloodwork (this is why I want to bring awareness). My platelet type HPA-1b/1b is approximately 2% of the caucasian population, whereas majority of the population has HPA-1a/1a, which is what my husband has. Basically, when my husband passes his “A” platelet type to create our baby, the antibodies in my body start to attack the baby’s platelets and can cause severe bleeding in the baby’s brain and other organs, causing death or baby to be born with varying severities of brain bleeds, which is called Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT) effecting approximately 1 in 1000 births.

Unlike when my parents were having babies in the 80s and 90s, there is now treatment called Intravenous Immunoglobulin (IVIG) which is derived from the plasma of hundreds of blood donors often used to treat autoimmune disorders. Although they are not 100% sure how it works or even how effective IVIG is in preventing babies to be effected by NAIT, we were grateful to have an option to hopefully bring us our healthy baby.

Fast forward after nearly a year and a half trying to conceive, multiple preconception and prenatal appointments with a Hematologist and Maternal Fetal Medicine (MFM) doctors, I began receiving a high dose IVIG infusions once a week starting at 17 weeks pregnant (which have been 12 -15 hrs long) and for the duration of my pregnancy, then going to twice a week IVIG infusions at 34 weeks. We also had weekly appointments with the MFM team and biweekly ultrasounds to monitor baby for any bleeds. I cannot even explain how anxiety provoking these ultrasound appointments were, just holding our breath waiting to see baby’s heartbeat and her brain.

The MFM doctors and hematologist recommended delivering the baby via cesarean at 37 weeks. This is because my antibodies attacking the baby get stronger further into pregnancy so 37 weeks is the safest time to deliver baby. As well as via cesarean to decrease any trauma caused to the baby during delivery as there is no way of knowing baby’s platelet levels until she is born.

Unfortunately, there is still so much unknown about NAIT and IVIG, the MFM and hematologists did their best to research and have a plan for us. I wish I could say it has been smooth sailing but there has been hiccups, controversy, self-advocating and a lot of stress along the way. Getting IVs weekly then twice a week, was very hard on my veins, many times did it take multiple pokes to get a successful IV running, some weeks we struggled to find a vein to attempt to poke.

As grateful as I am for there even being a treatment option to hopefully prevent NAIT, it unfortunately comes with many side effects and is very hard on the body. The side effects I experienced from the high dose of IVIG were weekly headaches/migraines, light and sound sensitivity, muscle stiffness, extreme fatigue and anemia. All of this, along with having so many appointments was difficult to manage working. I was grateful to have a flexible job as a nurse, however still had to take a medical leave. Every day, my husband and I chose to focus on what we can control and keep wishing for our baby to grow and be our healthy miracle.

Finally, the cesarean day came. The nerves were high but we were so ready to meet our baby girl. Our MFM nurse had created a care plan with multiple scenarios to be prepared for all the unknowns once baby was born. They took her first platelet levels through the cord blood which were in the 200,000s. The relief we felt was indescribable. However, when the blood sample from just our baby’s vein came back at <5000, they did a repeat platelet level, and they were even lower. This was our biggest fear happening. Baby was taken to the NICI where she received a matched platelet transfusion. I was not able to hold my baby due to her having low platelets. It was heartbreaking but I knew it was the right decision and when I finally could hold her it made the moment 1000x more meaningful and special. Thankfully our baby’s platelets levels went up and remained in the normal range after her platelet infusion. She had 2 brain ultrasounds and they both did not show any signs of a brain bleed. Although we are not sure and will never know why her platelets were so low, we are so grateful every day for our healthy, miracle girl. The thoughts still creep into my mind of what would have happened if I did not know my mother’s history or have my sister go through a treated pregnancy first and not receive treatment, what could have happened to my baby girl. I am so appreciative of what my mom and dad had to go through and helped us advocate for our babies so my sister and I did not have to experience the losses they did.

Here is our million dollar NAIT baby, Leighton Bella now 11 months old and thriving ❤️

Kiera Whitley