By Kiera Sosinski
My wonderful son Reichen arrived via an emergency C-section due to decreased heart rate in April 2007. The hospital staff had no concern about Reichen’s development and discharged us within three days. My husband Drew and I went home with a healthy, happy little boy. At around four months of age, Drew and I started noticing Reichen was obviously left-handed. Although we thought nothing of it, I mentioned it in passing to the pediatrician who recognized early hand preference as a potential symptom of something larger and immediately referred us to a neurologist. After spending twenty minutes with our son, the neurologist confirmed the fears of the pediatrician – our son had some sort of brain trauma, most likely a stroke.
We were initially devastated as we tried to figure out what the stroke meant for our precious little boy. We soon learned that he was very fortunate. The stroke left some mild right side weakness but did not affect cognitive or language abilities. At five months of age, he started a variety of therapies and has worked diligently to progress his skills. He is now four years old and continues to amaze us each day with his personality and determination.
We had many questions about the cause of the stroke. Our initial concern was whether Reichen was at a higher risk of a second stroke, so we began meeting with a number of specialists to try to determine the cause of the stroke. Numerous blood tests were run and all of the results came back normal. We still had no answers about the cause of the stroke. We were told a vast majority of childhood stroke patients never learned specifically what caused the injury and that it was most likely a fluke.
After a few years, we decided that we wanted to expand our family. We consulted the specialists and no one saw any concerns with adding a new baby to the family. With these statements echoing in our minds, we decided it was time to add to our family. At the end of October we learned that we were expecting baby number two in early July 2011.
Early pregnancy this time around was much different than with my son. I had morning sickness, which I had avoided with Reichen, and I felt more run-down, but overall it was wonderful to be pregnant again. Trying to calm my fears, I asked my OB at each appointment whether I needed to worry about a stroke for this little child. My OB decided to refer me to a maternal-fetal medicine specialist (MFM) to have another set of eyes on the case; just to reassure Drew and me that everything was fine for this baby.
The MFM started out by asking my husband and me to tell the story of the pregnancy and delivery of Reichen. As she listened, she determined that there was one blood disorder we had not been tested for that seemed to match the story we told. She informed us it was a rare condition we would most likely not have, but that she wanted to make sure we had a complete work-up.
In January 2011, at 15 weeks and 3 days of pregnancy, I received a call from the doctor to let us know that we tested positive for Neonatal Alloimmune Thrombocytopenia (NAIT). NAIT is a disorder where the mother is allergic to an antigen on the baby’s platelets. This means that my body creates an antibody that destroys fetal platelets. This can result in such effects as low platelet count at birth or a brain bleed (as in Reichen’s case), and if left untreated could be potentially fatal to the baby. The doctor walked us through the treatment process, which consists of a weekly infusion of an intravenous drip of an immunoglobulin (IVIG) extracted from the plasma of blood donors. IVIG treatments are very effective in preventing strokes. In cases where an older sibling has had a bleed due to NAIT, these treatments begin at 16 weeks of pregnancy.
My husband and I were still reeling from the diagnosis when I was checked into the hospital for the first IVIG treatment five days later. At this treatment I learned that there had only been a handful of mothers treated for NAIT at the large metropolitan hospital where I was and that I would be the first ever treated with IVIG in the labor and delivery ward of the hospital. That treatment was very difficult. I had reactions during the first infusion and after I got home, which included: low blood pressure, migraines, and extreme fatigue. We were initially told it would take about four hours for the infusion. It ended up being a 27-hour hospital stay. At that point, I realized just how complicated this pregnancy could get.
I reached out on the web and found a support group of women from all over the world who have experienced NAIT pregnancies. These amazing women assured me that there are things that could be done for the side effects and helped me to be an advocate for my treatments. They were there when I was checked into the hospital for complications from the IVIG; they understood the toll that the pregnancy, medications, and stress take on the body; and they knew what it was like to worry about whether your own body was attacking the baby where it should be safest.
Fortunately, after the first infusion, I started to tolerate the IVIG much better. The headaches became minimal and my energy level rose enough so I could carry on with everyday activities with my family, son, and work. The total time of each infusion was reduced to between 8 and 12 hours, which meant I no longer needed to spend nights in the hospital and instead could relax at home with my family. Throughout the pregnancy, medications and even brands of IVIG were adjusted to make sure it was the most effective combination with the least amount of side effects.
Since this pregnancy is so high risk, weekly baby monitoring and ultrasounds were needed beginning around 28 weeks. From that point forward we spent time each week looking closely for brain abnormalities or fist clenching (one sign of a stroke). After each scan, I would feel a sense of relief that she was still safe. It was also reassuring to hear the steady beat of her heart on the monitor for a couple of hours during each IVIG treatment so that I could hear that the treatments were not causing her stress.
During all of these treatments I started learning everything I could about NAIT. I learned that although this is rarely diagnosed, it is not all that rare. Some studies believe that up to 1 in 3000 mothers have NAIT, although the number of pregnancies that suffer brain bleeds is about 20% of that number.
I decided one of the things I was called to do as part of this pregnancy was raise awareness of NAIT and in utero strokes. It still scares me to think about how close we came to not knowing about this condition and potentially having this little girl suffer the consequences or even not survive due to NAIT.
As I write this I am 36 weeks pregnant. Since the antibodies ramp up during the final weeks of pregnancy, I will be delivering on June 13, 2011 at 37 weeks via a scheduled C-section. While the IVIG is usually very successful at preventing brain bleeds, there appears to be some cases where the platelet count of the baby is still below normal upon delivery. Due to the need to monitor her closely, our little girl will be taken to the NICU for a platelet count test. If the platelets are low, an infusion by a specifically matched platelet donor will be given to our daughter.
It is my hope to be able to share the news that this was a successfully treated pregnancy and that my daughter’s birth story is filled with joy. I feel so lucky to have been surrounded by doctors who thought to test for NAIT; nurses who have physically and emotionally supported me once a week during the 8-12 hour weekly infusions; an amazing online community of mothers who have also been through this; and friends and family who have been lifting us in thoughts, prayers, and deeds.
If you are interested in learning more about NAIT, please visit naitbabies.org. If you would like to learn more about our journey with NAIT, there is a site set up at http://www.caringbridge.org/visit/kierasosinski
Kiera gave birth to a healthy baby girl on June 13, 2011. Audrey Elizabeth was born weighing 6 pounds and 12 ounces, 19 inches long, and has a normal platelet count. Congratulations to Kiera, Drew, and big brother Reichen! See Kiera and Audrey pictured below!
