St John, New Brunswick, Cananda
Almost 13 years ago I had two miscarriages one at 6.5 weeks and another following that one about 3 months later at 8.5 weeks. I was told I would have to lose a third baby before they would do any testing to see why I had the miscarriages. A few months later I got pregnant again. I had bleeding at 14 weeks and I was sent for an emergency ultrasound which showed no reason for the bleeding. I went on to have a pretty much normal pregnancy. I was induced 12 days after my due date. My labour wouldn’t progress past 3cm and I had meconium in my water when it finally broke. They decided that she was in distress and did an emergency C-section. She was born weighing 9lbs 4oz. She ended up in the NICU cause she had low sugar and needed an IV to stabilize her sugar level. We went home 3 days later and she was healthy with no medical problems.
Almost 13 months later I became pregnant with my son. I had no problems with my pregnancy. He was a scheduled C-section because the doctor said his head was very big and because I had already had a C-section they would need to do another. He was born 10 days before his due date and there were no problems with the delivery. About 3 months later I noticed my son was not extending his left arm or opening his left hand. He wasn’t using his hand to grasp anything. I questioned that at his 4 month check up. The doctor felt that he was probably just right hand dominate. When we went for his 6 month check up I insisted there was something not right. She referred us to a pediatrician. Two months later we saw a pediatrician who told us that there was some muscle spasm present and he would need to see a neurologist. Two months after that we saw the neurologist. I went to the appointment thinking we were going to be told he would need extensive physiotherapy for his hand but I was told that when we see “this” in a child the child may never walk or talk. The neurologist told me my son would not be normal like my daughter and ordered an MRI to determine how severe his case would be. We were told after his MRI that he had a slight abnormality in his brain and form of brain damage and it was really hard to find on the scan and we shouldn’t worry about it cause it was minor. I asked what “this” was cause they kept saying “this”. The doctor told me that if he had to put a label on it, it’s Cerebral Palsy and he has Left Hemipeligia. I was told it happened during my pregnancy and for years I blamed myself that I had done something wrong. Each milestone my son reached gave me hope that he would be just fine. He walked at 15 months and started talking really good around 2 years old. He had some speech therapy but had his tonsils and adenoids removed at 2 and his speech became much clearer.
When my son was six and I was in a new relationship we found out at our 18 week ultrasound the day after Thanksgiving that our baby had died just days before the ultrasound. I was sent home overnight and admitted the next day where I was given some tablets to start labour so I could deliver our baby. I requested another ultrasound because I was having a hard time accepting that out baby had died. I had refused the pain medication they offered and I felt every contraction. The nurse asked just before I delivered my baby if I wanted to hold him. At that time I couldn’t handle that so I said no. I delivered our baby boy just before midnight and they immediately left the room with the baby. We left the hospital the next morning. I spent months recovering from the loss. I experienced post partum depression and ended up leaving my job due to the PPD. I didn’t even know if the baby was a boy or a girl. I had to do some research to find out that I was carrying a baby boy. Due to the fact that a loss of a baby before 20 weeks is classified as a late miscarriage, our baby boy was never tested and no autopsy was performed. Therefore, we had no idea why he died. We were unable to legally name him but I named him Jackson Joseph.
A little over a year later I found out I was pregnant but terrified and did not allow myself to get excited. I never told my baby’s father I was pregnant until I had an ultrasound at 11 weeks and everything looked good because of what we had already been through with our first loss. We waited until our 16 week scan to tell my children, close family and friends we were having a baby boy. At our 20 week ultrasound we were told everything looked great and we allowed ourselves to be excited and started spreading the great news.
When I was 26 weeks I noticed I hadn’t felt any movement for most of the day. After monitoring myself all night I still had no movement. After arriving at the hospital I was told they were going to deliver may baby. They decided to do an ultrasound and that was when they noticed the fluid that had filled his brain. I was told that there was no point having an unnecessary c-section because he wouldn’t survive anyways. We had to wait for his heart to stop beating and I was told I would have to deliver him. They checked every hour and we could hear his heart beating slower each timer. It was awful, just waiting for him to die. I felt like I had let him down. They did extensive blood work and amniocentesis to try and determine what happened because they told me it was rare to lose two babies like I had. The autopsy revealed our baby Grady died of a massive ICH. A few weeks later our tests came back with a diagnosis on NAIT. We were told that we shouldn’t get pregnant cause of the high risk of it happening again and that we were in the 100% range of having another affected baby that we may also lose and if I got pregnant we would have to have IVIG treatment which was very risky for both me and the baby. We were told if we really wanted a baby together we should consider a sperm donor. That was it for us. We couldn’t go through another loss.
Almost 2 years later I unexpectedly became pregnant again. After two early ultrasounds my doctor believed the pregnancy was going to miscarry. I decided to let things happen naturally. After 3.5 weeks of waiting I contacted the doctor to book a D&C because the waiting drove me crazy. I explained that my pregnancy symptoms had gotten stronger and I really wanted an ultrasound before doing the D&C. Almost a week later during the ultrasound my doctor found my 10.5 week baby with a strong heartbeat. That was when I started my research on NAIT and found the NAIT yahoo group from the Wikipedia site. I asked plenty of questions and members from the group provided me with information I would never have known to ask my doctor.
I started 1g of IVIG once a week at 16 weeks and had an ultrasound every two weeks. After the first two IVIG treatments I had the IVIG treatments split to twice a week to help the headache I couldn’t get rid of. Around 21 weeks I started having weekly ultrasounds to scan my son’s brain for signs of ICH. I had blood work every two weeks to monitor how my body was handling the IVIG. I was scheduled to deliver my son by C-section at 38 weeks but I felt uncomfortable waiting an extra week so we rescheduled it for 37 weeks. To prepare for my son’s arrival, donor blood had been shipped in just in case he required a transfusion when he was born. At 37 weeks 1 day my son was born by c-section with a platelet level of 185K. He was tested 6 hours later and they rose to 193K and 6 hours after that they were over 200K. He had blood work every day we were in the hospital to test his levels and the rose on their own. We named him Nathan and “Nate” is his nickname. We thought his name was well suited with it’s meaning precious gift from God and Nate will always remind us that with treatment, families diagnosed with NAIT can have a healthy successful pregnancy. He is now 4.5 months old. Our doctor believes that my oldest son’s cerebral palsy was a result of NAIT but 10 years ago he was never tested. I am thankful everyday that my two older children were born by C-section or their story could have ended differently.