Josh, Renee, Maria, Sophia and Jackson McDonald
USA
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.
Renee