Josh, Renee, Maria, Sophia and Jackson McDonald
I delivered my 1lb 2oz baby girl Maria in March of 2005. After spending days on total bedrest, in the hospital on VERY high doses of Magnesium Sulfate, our heart rates started to decrease to a very dangerous place. I’d had a stroke the night before and couldn’t speak or see. My body was shutting down. She was born via emergency c-section at 26 wks. Amongst her MANY health issues was low platelets. The doctors didn’t seem concerned because it isn’t unusual for a 1 lb baby to have low platelets. They gave her platelet transfusions and after about a week, platelets were no longer an issue for our little peanut. She spent a very long and arduous 3 months in the NICU but eventually came home with us about 3 weeks before her due date.
Two years later, after a completely uneventful pregnancy I delivered our beautiful little girl Sophia at 36 weeks and 6lbs 6oz. She was beautiful and we felt so incredibly lucky to have what we thought was a completely healthy baby after what we’d been through with her older sister. But we suspected something was wrong when the nurse came in to take her blood for a 3rd time. Later that night the pediatrician came in to give us the bad news. She said that Sophia’s platelets were extremely low. She said a normal baby should have a count of around 200k but our babies count was 6k. She said that she had bruises wherever she’d been touched and petichea all over her body. We had barely been able to hold her so we hadn’t seen any of this except the two bruises on her head where the doctor put his fingers when he delivered her. They had already called for the closest NICU to come get her. We asked if we could hold her before they took her and were told “maybe”. We ended up only being able to hold her for about 30 seconds. Having her ripped from my arms was one of the most difficult moments of my life. In fact the only solace I have about Maria’s birth is that I was unconscious, so I didn’t have to watch her be wheeled away in an isolette. I didn’t have that with Sophia. I also didn’t have the knowledge of WHY this was happening. I didn’t sleep a minute that night. I just kept going over it in my head. What could possibly be causing this? Was it something I had done? Was it my fault? It was a mentally draining first night. Not at all what we expected and honestly not what we deserved after everything we’d gone through 2 years earlier. I really felt cheated. I felt like we’d gone through this horrible thing so now we were supposed to catch a break the second time around. But it was clear that wasn’t going to happen.
The next day the neonatologist called to tell me I needed to come see my baby and give them a sample of blood. I explained that I wasn’t allowed to leave the hospital and I definitely wasn’t allowed to leave to make the hour long trip up to the NICU. He continued to pressure me saying that I needed to bond with her and she needed visitors and that they needed my blood and my husbands. I told them I could have Josh bring samples of our blood up there but I hadn’t even been out of bed yet after my C-section so my visit would have to wait. It was absolutely gut- wrenching. I wanted to be there so badly and he certainly wasn’t making that any easier. The next few days were spent alone in my hospital room. Everyone was up visiting with the baby. They were holding her, talking to her, feeding her, dressing her. All of the things I should have been doing. During that time she had an IV placed on her head because unfortunately, she inherited my horrible veins, and they did a scan of her head to make sure she didn’t have a bleed on her brain. Thankfully she didn’t. On day 4 I got the news that I would be getting a “roommate” who was having her baby at the moment. I knew I couldn’t handle seeing a happy family with their new baby, so I begged and pleaded and was released early from the hospital so I could be with my baby. When we got to the NICU we were given the news that we had a rare blood disorder but were told that all Sophia needed was time, platelets and IVIG. Slowly but surely her platelet counts came up. We were unbelievably lucky that our little girl got to come home with us on the day she turned 1 week old. And we are so grateful that things weren’t nearly as bad as they could have been.
When Sophia was about 1 yr old we started discussing having another child. We had always wanted a big family and for our children to be close in age. But we were incredibly scared. Luckily someone from the yahoo message board found me on another message board and said “before you consider having another child, you need to join our support group so you can get some more information”. That woman is responsible for me having a HEALTHY third child. Without her, I would have believed what my regular OB/GYN said when he told me that it was “no big deal” and I would just need to be monitored with ultrasounds. Because of that group, I knew he was wrong and I knew I had to become an advocate for my child. I called every hematologist and MFM that I could. Eventually he listened and I was referred to an MFM who had handled a lot of NAIT cases before. It was a 3 hr drive to his office every month, but it was worth it to be under the care of a Dr who knew the risks and treatment of NAIT.
I opted out of Dr. Bussels study and instead chose to do 1g/kg of IVIG twice a week starting at 20 weeks. I ended up needing a PIC line because my veins are HORRIBLE. My first treatment was…eventful. Lets just say I didn’t tolerate it as well as I had hoped. I was shaking uncontrollably, vomiting, body aches and had a terrible headache. What was supposed to take 10 hrs turned into 28. I believe that it was the brand of IVIG that I received that caused the reaction because my home treatments started the next week and I never had a severe reaction like that again. I basically had a dull headache that never went away until delivery. I was exhausted ALL of the time (however, I was also caring for 2 toddlers at the time). But I made sure to stay hydrated, I took A LOT of Tylenol and I had the help of an AMAZING husband who basically had to do his job AND mine when he got home. Without him, I NEVER could have gotten through it.
At 30 weeks I had a cordocentesis. I was petrified going into it, but it honestly wasn’t nearly as bad as I expected. I was given quite a lot of medication (4 times the normal amount) that was supposed to put me to sleep but I’m a bit of a control freak so it just made me really relaxed as I watched the entire procedure. I was again, blessed. This time, with an amazing Dr. who was very experienced and really made me feel like I was in capable hands. Thankfully, when the nurse called with the platelet count it was 159k…NORMAL! We were beyond relieved. The Dr pulled the needle out of my belly and after a little while in recovery, we got to go home. I continued having my IVIG treatments until I delivered Jack at 34 wks (early due to my blood pressure issues) at 4lb 7oz. My only regret about his birth is that the hospital was unaware of our condition so his platelet count wasn’t taken until the next morning. But when the test came back, his count was 169k. We were so happy. Basically, he spent the next 2 weeks just growing and learning how to eat in the NICU. We now have a wonderful, beautiful, HEALTHY family and that’s all we ever wanted.