St. Pierre Family
Our NAIT journey began 19 weeks and 6 days into our second pregnancy. My first pregnancy, our son, was so incredibly normal.
My water broke on my due date and 13 hours later he entered this world in a calm delivery room. Just shy of 20 weeks with our second, we went to our anatomy scan and our world changed. Our daughter wasn't moving too much and the doctor was called in. It was the worst case scenario, she had a brain bleed and bleeding in her stomach. The doctor told us there was nothing we could do and the following morning at the office we couldn't find her heart beat on the doppler. Our daughter, Charlotte, had passed and it felt like our world came to a halt. I was scheduled to deliver her in the hospital the following morning and then we'd have testing done to confirm, what we now know was the cause, NAIT.
We had lost all hope of being able to safely bring another baby into the world. Even though there were so many stories of other families having success with treatment after their diagnoses, none of the stories I read came close to our situation. At the time, there were no stories of a baby passing, let alone prior to 20 weeks. Through our weeks of grieving, we came to accept that maybe one child was all we would be blessed with and we were thankful for that.
One year later, in the same month we lost our daughter, we found out we were pregnant. As I write this, I can still feel the overwhelming anxiety and unequivocal joy I had in that moment. In the first month we had several appointments with my OB and Maternal Fetal Medicine to confirm and reconfirm the gestation of the baby and to establish my plan of care. My doctor's and I agreed that with the severity of the last pregnancy we were going to pursue the most aggressive treatment.
At 12 weeks I began the weekly infusions at the highest dose of IVIG recommended. My infusion took 5-6 hours to complete and about 4 hours after the first one I started having horrible side effects. My neck and head were throbbing and felt like they were going to explode, I had horrible nausea and vomiting and couldn't open my eyes or move without pain. Thankfully the symptoms only lasted about 12 hours. I wasn't sure I could do it again, but what choice did I have? The second infusion was better, I had tylenol and benadryl beforehand and the symptoms were just a mild headache and fatigue. Thankfully, after the third infusion I had no symptoms at all. At about my 8th infusion I decided to try without the pre-meds and everything went well, no symptoms afterwards. My infusions continued to be 5-6 hours long once a week through the remainder of my pregnancy, 24 in total. At 20 weeks I started prednisone, which I continued at a high dose for 16 weeks before beginning to wean. I had monthly ultrasounds to check on the baby and after 24 weeks those increased to bi-weekly, along with NST testing to make sure the heartbeat looked good. Due to the stress and the high dose of steroids, I was diagnosed with high blood pressure at 30 weeks which I had to monitor 3 times a day at home. I was also placed on "bed rest," although they wouldn't call it that, I had to severely reduce my activity.
At 36 weeks and 2 days I delivered a beautiful baby girl, Isla, via c-section. The c-section was recommended by my doctor to reduce the risk of a brain bleed during delivery. Our baby was a healthy 7lbs 11oz. She spent a day and a half in the NICU to monitor her platelet levels. Thankfully her levels stayed steady and she was discharged to my room. I was discharged after 3 days in the hospital.
Over the next few months I slowly weaned off of the prednisone. I struggled with the after effects of long term steroid use and only until about 10 months after my daughter was born did I begin to feel and look like myself. Looking back, I feel like my adrenaline just took over for my entire pregnancy. I just had to push through and make it for her. It was 100% worth it and I would do it all again in a heartbeat, but I won't pretend that it wasn't one of the hardest things I have ever done in my life. My hope is that you read my story and know that even though you may feel defeated in those first days of receiving the diagnosis, it is possible to have a healthy baby and it can be achieved even when you are dealing with the worst possible outcome.
Don't give up, you are strong and you can do this.
Samantha St Pierre