Today I have another special guest bravely sharing her miracle baby story. My friend and colleauge, Kerry-Ann Grant, had a baby with NAIT disease. This basically means that, while pregnant, her own antibodies could attack the baby's which could lead to terrifying consequences when the baby was born. NAIT is not a common disease, as you will learn, but Kerry-Ann and I both wanted to share her story to raise awareness to this rare condition and bring comfort to anyone else who is dealing with NAIT. Welcome, Kerry-Ann!
People say babies are miracles and it's true: every single baby born into this world is a miracle. I knew this was going to be especially true for my baby. If he made it, he'd be considered a medical miracle on top of just being an everyday miracle. You see, even before my husband and I were married, even before we were engaged, I knew that any potential child of mine would have a 50% chance of having a disease called NAIT.
NAIT stands for Neonatal Alloimmune Thrombocytopenia. It's a shit-ass disease. According to the organization naitbabies.org: “NAIT is characterized by the destruction of platelets in the fetus or newborn in response to certain platelet antigens that the fetus has inherited paternally but are not present in the mother. The mother sees these antigens as ‘foreign’ and may respond by producing antibodies against these intruders. Antibodies, an important part of the body’s immune system, may cross the placenta, enter the baby’s bloodstream and destroy her unborn baby’s platelets. Spontaneous bleeding into the brain ICH (intracranial hemorrhage) or other major organs may occur putting the baby at serious risk of death or permanent brain damage causing lifelong disabilities.”
Like I said, it’s a shit-ass disease.
We did the testing to find out if our baby would have this disease and, yep, he would. That was a pretty awful day. I remember getting the call at school from the hospital with our results. I told my partner it was fine, he didn’t need to be there. It was just a phone call. They were either going to say, “No, your child wouldn’t be affected or yes, your child would be affected.” Easy. I got this. I was prepared. I knew it was 50/50.
Wrong, I wasn’t prepared. When the nurse told me over the phone that not only did we have to deal with NAIT, but it turned out that I was in that 2% of the world’s population that had a double negative platelet type. I think I stopped breathing. About 86% of the world’s population has double positive platelets, 12% have positive/negative platelet type and 2% have double negative.
2%: that’s what it boiled down to.
The nurse asked if I had any questions and that an appointment had been set up for us to meet the maternal fetal specialist, Dr. Greg Ryan. Although, I think I stopped listening after I heard, “Yes, you will have a child who is affected.” I walked across the hall to a colleague and told her I was leaving. I was crying. I was in a trance. I don’t really think I even thought about my kids (I teach Grade 3) who were in French class or something. I just grabbed my purse and walked out.
I drove home somehow and then stopped the engine in the garage and continued crying my eyes out. I don’t know how long I sat there crying, but eventually Blake (my husband) came out to find me. I’ll never forget that day in October because it was one of the worst days of my life finding out that my baby would have this disease. It was also the day I knew beyond a shadow of a doubt I had found my life partner.
Blake opened the car door and pulled me out. He knew what this meant. He kept saying, “It’s okay. We can do this. We’ve got this. I’m going to be with you every step of the way.” He asked me to marry him exactly a month later. He knew what he was getting into, and he loved me anyway.
NAIT only effects about 2% of the world’s population so it’s pretty darn rare. I have never met anyone that knows about NAIT except people in my family and others I have met through NAIT organizations, and Dr. Ryan, our NAIT specialist who treated us. Any of the doctors or nurses that we had to see through a triage department (because that happened a lot) had never heard of NAIT. I got so sick of explaining to the doctors what NAIT was, what they should be looking for when they were doing the ultrasound, what could be happening to our baby, my husband and I practically had a script that we memorized and could spit out automatically each time we ended up there.
So here’s what my pregnancy looked like. It didn’t look “normal” or what any of my friends’ pregnancies looked like. But it was my pregnancy and my baby, and damn, I was going to try to make this pregnancy look like any other pregnancy. I got real good at self-talk and really good at putting on a smile. I fully completely adopted the method of “fake it ‘till you make it.” I believed that if I remained positive, up beat, optimistic, Caleb could fight this. We could win. He would win. I kept saying things like, “You will arrive healthy. You are a warrior. You’ve got this. I’m here with you every step of the way.” Kind of like what Blake said to me back in the garage all those months ago.
After we got pregnant, I was monitored pretty regularly. For my first 19 weeks, I either had an ultrasound, blood work or a combination of both at Mount Sinai hospital in Toronto every week or two. We had met with Dr. Ryan multiple times now and had a game plan. I would begin treatment starting at 20 weeks pregnant. Because this was my first pregnancy, Dr. Ryan explained that my body didn’t really know what was going on. It was like a “slow learner” (his words, not mine). My body knew something crazy was going on “like what the heck are these positive platelets doing running around my body,” but it didn’t know what to do about it yet.
At exactly my 20th week of pregnancy, I began my first IVIG treatment. Platelets regenerate every seven – 10 days so every seventh day I had another treatment. My treatments always happened on a Friday. Wednesday ultrasound, Friday treatment. It became our thing.
IVIG stands for intravenous immunoglobulin. Basically, the doctors had figured out that this IVIG treatment, which is taken from over a 1000 blood donations, somehow helps the body fight back. They aren’t completely sure yet if the IVIG blocked the antigens that my body was creating to attack the babies platelets or if the IVIG put a kind of bubble around the babies platelets or even something else. What they did know was that women who received this treatment had a much higher chance of delivering a healthy baby.
And that’s what we did. Every Friday, we’d set off at 8am to be ready to start treatment by 9am. We left the hospital between 4pm and 5pm to head back home. The treatment was long. They inserted an intravenous line into the tops of my hands, alternating each week. They did this so my veins would have a chance to recover each week. By the end of it, my veins had “collapsed,” and it was nearly impossible to get the needle in each week. But we soldiered on. I was hooked up to fetal monitoring each week so Nurse Sue (who became an incredibly important person in our journey) could monitor Caleb during the seven-hour to eight-hour treatment. It often produced vomiting, migraines, and always, exhaustion. It wasn’t fun. I cried every week during them at least once. But every time, I also got this huge rush of strength and pride. At least I was doing something to help Caleb fight. I began to feel like a warrior myself. I began to believe that Caleb knew what was happening and he was up for the fight. We could do this together. We could kick NAIT on its ass. Blake came with me for every treatment but two. My mom came, my mother-in-law came and my friends came. I was never alone, not for one minute. I was blessed.
Each treatment costs between $12,000 – $15,000 (Canadian). Each Friday, that’s how much it cost for Caleb to have a chance at survival. That price tag was just for the weekly treatment. There were separate costs for the in utero samples we needed, the times we ended up in triage, the steroid injections, the blood work, the extra nurses assigned to me and to Caleb. I live in Canada so every single penny was covered with our health care. People joked that Caleb was going to be the million-dollar baby, and it was close.
By the time our son was born, I had had over 10 blood tests, 16 IVIG treatments, 25 IV’s put in, about 15 ultrasounds, four trips to triage, two fetal procedures, around 13 appointments with specialist doctors, and began to feel that the seventh floor of Mount Sinai was our second home.
There were a lot of scary days and nights for us. It wasn’t an easy pregnancy. During that time, I really learned what faith was. We had to have it in spades. We chose Caleb’s name solely because it means faith.
During my second in utero fetal procedure where they were trying to figure out what Caleb’s platelet count was (on average you should have a platelet count of 150 000 – 400 000) we were yet again prepared to deliver Caleb. My first procedure was at week 30. I was given a steroid shot for Caleb’s lungs in case today was the day, and I was sedated so Dr. Ryan could do the procedure. That probably was the most frightened I’ve ever been in my life. I knew there was a strong chance that if something went wrong during the procedure or Caleb’s counts were too low, they would be “taking the baby” (again, their words not mine.)
Being inside a “procedure room” in the hospital and having Dr. Ryan, a teaching fellow, an anestiologist, three nurses, and Blake all “work” on me was so surreal. After Dr. Ryan got a blood sample from Caleb’s liver (he was suppose to get the sample from the umbilical cord but Caleb was in an awkward position so he couldn’t), he literally hands the sample to a “runner” who runs down to the lab and they process the blood right away. About three minutes later the phone rings. Dr. Ryan answers and says, “Okay, is that confirmed? Did you test again? Okay, sending down another sample to double check.” He hangs up the phone and turns to me and says, “No baby for you today. 279.”
279,000 platelets. That’s how many platelets Caleb had in his little body at that exact moment. 279,000. Never had there been a sweeter number.
We continued our plan: seven more weeks of treatments, one more fetal blood sample and one more count of great numbers. Dr. Ryan told us after the second in utero blood sample Caleb had seven days to come naturally or I would be induced. Babies who have NAIT walk a fine balance between being in utero long enough to grow and develop properly with being in utero too long where the anti-bodies that the mother creates can harm the baby. Caleb’s time was up. The treatment appeared to have worked, but now we had seven days because who knew what would happen after the seventh day when his platelets begin to regenerate.
I was induced on my birthday, August 11th. The greatest gift I’ve ever received. It was a crazy labour due to our circumstances and Caleb taking his sweet ole time. He was born at 4:31 am on August 12th.
Before the umbilical cord was even cut, they had taken a blood sample from the cord and from his heel. Another runner ran. Three minutes later the phone rang. 264 000.
It was the first real time in over nine months where I exhaled.
Caleb spent his first week having multiple blood tests just to make sure his platelets were steady and wouldn’t drop. We knew that between 7 – 10 days we would be out of the woods. It took me about six months to really trust that.
On his ninth day of life, we had a celebration of life for Caleb. Over 60 friends and family and Nurse Sue, who so lovingly cared for me during all those treatments, came to meet Caleb.
The almost million-dollar baby.
So why have I shared my story? Because NAIT can be detected by a simple blood test. So many babies’ lives could have been saved. So many babies could have been born without life-altering disabilities. So many mothers and fathers could have been saved the suffering of losing a child.
I was lucky. I knew my baby might have NAIT because my sister’s children did. So I got tested. But because NAIT is such a rare disease they don’t do any screening for NAIT when you get pregnant. That’s what many of us are fighting for. I belong to an organization called naitbabies.org (check us out), and we are slowly trying to spread awareness. Two percent doesn’t seem like a lot, but, if it was your baby, two percent is everything. We have people all around the world – Australia, Canada, UK, Germany that are trying to spread the word. NAIT doesn’t discriminate. Most people don’t find out about NAIT until they’ve lost a baby or sometimes, even more tragically, more than one baby. If your baby suffers an ICH (intracranial hemorrhage) in utero, many doctors don’t even know why or that it could have been caused by NAIT. If you think you or someone you know might be affected by NAIT, you can go to these websites to get more information.
You could also call your local hospital and ask to be connected with a Maternal Fetal Medicine Specialist. If you live in a big city, your chances of someone knowing about NAIT are greater but the above websites can help you find doctors in your area that can help.
Caleb Ryan Grant-Lambert just celebrated his 5th birthday. And yes, his middle name is for Dr. Greg Ryan, who helped us get our miracle.
Love from one proud mama,
Kerry-Ann Grant
