Struggles in Raising Kids with Congenital Hypothyroidism
That precious, little baby in the picture is my oldest son who has congenital hypothyroidism. He was 5 months old and in the hospital when that picture was taken. My oldest son recently had his golden birthday. Your golden birthday is when you turn the age that corresponds with the day of the month you were born. For example, if you were born on January 18th, your golden birthday would be the year you turn 18. I think your golden birthday should be a birthday that gets a little extra attention. So, we bought some gold balloons ready and ordered a cake with a big gold medal on it. Just a few things to make this birthday stand out a bit. When I think about how much he’s grown and changed, I get a little teary-eyed. I think that’s common for most parents. Each birthday means they’re older and more mature but each birthday pulls them farther from being our little babies. His birthdays, though, always serve as a reminder of how lucky I am to have spent another year with him. I am grateful for both of my children. I am thankful that they are here. Both of them, though, have their own unique stories of how life challenged them early on. But, since my oldest son’s golden birthday just occurred, I’ll tell his story first.
My pregnancy was fairly uneventful with my oldest boy. He arrived early, but not so early that he had any health issues (other than congenital hypothyroidism and some jaundice in those first few weeks). His first few months were normal. He slept, ate, smiled and cooed. He was doted on by everyone from grandparents to his teachers at daycare. We worried a lot about his health because he has congenital hypothyroidism, but by the time he was 5 months, we were in a bit of a groove (as much as you can be with a 5 month old). It was summer time. We had a big weekend planned. That Saturday, I was running in my first 5K since having him and we had a family event planned. I don’t recall the reason for the family gathering (I think it was someone’s graduation) but after the race, we went to my husband’s aunts house where my son was held and loved. That Monday morning, I noticed that my son had a few marks on his skin. They were small, and appeared to be a faint brown color. I thought they were freckles. I have freckles and we had spent a lot of time in the sun that weekend, so I assumed that he was getting his first freckles. I was wrong, but wouldn’t know how wrong until later that day.
My son spent the day at daycare, and was to be picked up by my mom. I was busy at work, when my phone rang. My mom said that he had spots on him, like a strange rash. His teacher at the daycare said more had appeared throughout the day, and she was very worried about him. She was getting ready to call me when my mom walked in. I told my mom to take him home while I called the pediatrician. I spoke with a nurse who instructed me to bring him in. She said anytime an infant under the age of 6 months gets a rash, it should be looked at by a doctor. My husband and I picked up our son from my mom’s house and took him to the pediatrician. The spots were everywhere and were a bluish purple color. The pediatrician said she needed to do blood work. We waited. I wasn’t really worried because I didn’t think it was anything serious – I thought it was some kind of rash. That changed in an instant. The pediatrician walked into the room and her face had drained of all its color.
She sat down right in front of me and explained that our son’s blood platelet level was extremely low and that the spots on his body were petechiae (superficial bleeding into your skin). I asked how low and she said something about imagine the number you need is 200 – his is 2. I didn’t know exactly what she meant, but I knew that sounded really bad. I started to cry and she handed me a tissue but kept talking in this quiet, stern voice. She said that we needed to go to the hospital immediately, and that they would be waiting for us to arrive. She reassured us that he would be okay and that the doctors at the hospital would know what to do. She offered to call an ambulance, and we declined the offer feeling that we could get him there more easily and with less fuss (the office was not far from the hospital).
[This is a picture showing some of the petechiae on his arm – taken after he was released from the hospital – but it gives you an idea of what it looked like.]
When we arrived at the hospital, we checked in and they took us to a hospital room. If you haven’t ever been to a children’s hospital, the cribs are metal cribs with really high bars. To me, it looked like a lot of little cages. We walked down the hospital hallways, and I couldn’t help but notice all the children hooked up to tubes and machines. I felt like I was in a nightmare. How could my son need to be here? How could he be this sick?
A doctor appeared and explained that our son had ITP (idiopathic thrombocytopenic purpura) and that he needed IV/IG treatment (intravenous immunoglobin treatment). His immune system had gone haywire and was attacking blood platelets as if they were a foreign substance. I didn’t know what that was or what it meant, but he said the IV/IG would get his blood platelets back up to a normal level. He said they needed to start an IV immediately, but even starting the IV was dangerous because our son was at risk of bleeding out. Bleeding out? The voices inside my head were literally screaming. I recall looking at my husband quizzically. My husband is not a doctor, but at the time, he sold pharmaceuticals and came from a family of doctors. He knows so much more about the body than I do. He looked at me and said something about bleeding internally. The voices I was hearing at this point were like strange talking heads.
They took my son into a different room and proceeded to try start an IV. Luckily, I was allowed to be with him. I had been with him for each blood draw he’d had for jaundice and congenital hypothyroidism so blood draws and IVs didn’t bother me and I was used to having to hold him while he was stuck. But, this proved to be very different. Each time the nurses tried to get a vein, they were unsuccessful. After 12 tries, no IV. My 5 month old child was now covered in more petechiae and bruises. Then, his doctor was on the phone – almost yelling – about someone from the PICU. He wanted a team of PICU nurses. I was praying quietly yet fervently to myself. Two women from the PICU came in. They were calmly but quickly assessing his little body as the other nurses explained where they had already stuck him. No luck. Each stick brought more tears and more anxiety – for everyone. He was a pudgy little 5 month old and by this point, he was dehydrated from all the crying and of course, I hadn’t been able to nurse him through all of this. Babies at this age are often hard to “stick”, but this seemed like some kind of cruel joke. He needed an IV, but sticking him was dangerous and thus far, unsuccessful.
In the hallway, I confronted the doctor. I was beside myself. How can you tell me he is going to bleed to death and then keep sticking him over and over again? I told him I needed to move my son to a hospital that knew what they were doing. [I realize now that sounds harsh, and I don’t mean to imply that they didn’t know what they were doing, but I was not rational at this particular moment in time.] The doctor told me that I couldn’t move him anywhere because he might die. It was too dangerous to transport him anywhere. I thought my knees were going to buckle, and I was going to pass out right there in the hallway while my poor child was probably bleeding to death. It was one of the worst moments of my entire life. I somehow pulled myself together and basically (and probably not very nicely) ordered the doctor to find someone who could start the IV immediately. I turned to my husband and asked him to call his step mother, who at the time was a physician in the Emergency Room at a hospital about 30 minutes away. I wanted to see if there was anything she could do. I don’t know what I thought she could do, but I wanted her and my father in law (also a physician) to start making calls. I ran back to my son’s hospital room where my mother was waiting for us and quickly updated her. She was furious and terrified. I could see the panic in her eyes. I’m sure it matched mine. I begged her to call everyone we knew to ask them to start praying.
I ran back to the room where my son was. Next to arrive behind me were the NICU nurses. They talked about sticking the vein in my son’s head. That sounded terrible to me. Looking back on it now with a little more knowledge, I should have screamed yes. All of the sudden one of the nurses said she could hit a vein in his foot. She was right. It was very precarious, and they taped his foot to this little board. They started the IV/IG and we brought him back to his room. They said for me to nurse him on normal schedule, but not under any circumstances were we to allow that IV to fall out or for him to pull it out. I remember thinking “is that all”? He’s 5 months old for goodness sake. How do we keep him from knocking out this little IV that’s barely even in?
We didn’t sleep. Not even a wink. We were terrified. The next morning, a phlebotomist came to take his blood to check the platelet levels. She knew about his ordeal. She took his blood quickly and without incident. I felt almost like she was an angel. I think God sent her to do that draw because there was no problem. She was so kind and sweet. Not long after, the doctor arrived. He explained more about ITP and said that there were various causes of ITP. He said that it could just be from a virus, and my son would recover with no problem. He also said that it could be chronic ITP (meaning we’d have to go through this again probably and that my son wouldn’t be able to play sports, etc.), but that we wouldn’t know that for a while. We asked whether this was related to congenital hypothyroidism but the answer was probably not (that’s something I’m still not sure about). Then, he got a serious, sad look on his face and said we have to rule a few things out. I asked him what he meant. He said the “L word”. I recall him saying that he didn’t even want to say it out loud because he didn’t want to frighten me, but that leukemia could be causing the ITP. Again, I felt like I was having an out of body experience. I remember shaking my head in disbelief. I thought we had already been through the tough part and that the IV/IG was going to fix everything.
We survived more blood tests and spent many, many hours in prayer. In the end, the blood tests revealed that my son did not have leukemia. He also did not have chronic ITP. His platelets were so low that we were told he was going to be in the hospital for over a week. Miraculously, his platelets increased to a healthy level within a week of being admitted, and we were sent home. When the doctor was discharging us, he said he’d never seen a child with such low platelets rebound so quickly. I looked at him and told him that he must not have seen a child that had been prayed for as much as my child had been.
There’s no scientific explanation of how my son survived that ordeal. A normal platelet count is over 150,000 per microliter of circulating blood. People with ITP usually have a count of about 20,000, and below 10,000 is considered dangerous. I was told that my son’s platelet count was at 2,000 at it’s lowest point. He could have bled out at day care or in the precarious hours that followed. His platelets were that low. The only explanation I have of how he survived and why he survived is that it wasn’t his time to go. God wanted him here longer, and for that, I’m thankful.
What’s interesting about this child is that he is very sweet, and has a very old soul. He is very compassionate and sensitive to the needs of others, particularly for his age. Two summers ago, he begged me to have a lemonade stand to benefit the orphanage in Haiti that our Church supports. He raised $96 in a few hours. For his birthday last January, he asked for his friends to bring food for BackPack Buddies in lieu of birthday presents. When I asked him why, he said that his guidance counselor said they needed donations and he wanted to get donations. It was as simple as that. For those who don’t know what BackPack Buddies is, it is a program that provides backpacks of food each weekend for children from food insecure homes. One afternoon last Spring, we were talking about how Spring Break was going to be 9 days long. My son said he was worried about the children in the BackPack Buddies program because one backpack of food wouldn’t be enough to last them for 9 days. So, he organized a food drive for the BackPack Buddies program at his school. He is always thinking about how he can help other people. He has been quoted as saying “You always have a choice. You can choose to help or choose not to. I choose to help!”
One day, I was telling the Pastor at my Church about all he had done. She said that people like my son are described as “caught” meaning they have been caught by the Holy Spirit. She said that was the reason why he survived. Indeed. This child has a heart of gold. This golden child on his golden birthday. All these years later, I still get choked up when I think about that day and night when we almost lost him. I still find it difficult to talk about what happened. I still get nauseous if I happen to be around the diapers that the hospital used (they were a different brand than we used and had a strong baby powder smell). It is that strong of a memory. I don’t take my children for granted. None of us do. We know they are gifts. For me, this ordeal was a terrifying reminder, though, of how precious life really is. I worry about my children having congenital hypothyroidism, but I am thankful that it is something that can be treated with medication and nothing more serious. I rejoice that this is a story with a happy ending…it’s a story about a miracle that happened in my presence and before my eyes. I know how blessed I am to have received this miracle. On his birthday, this golden birthday, I celebrated the miracle that he is.
Many people ask me why I have decided to write about our family’s journey and more particularly about our health struggles. The reason is that I believe it will help other people who are going through similar experiences. I believe in the power of community and building a network that can help us all become better advocates for ourselves and our children. I believe that the more we talk about thyroid disorders, the more attention and focus thyroid disorders will get and then hopefully more research dollars will go towards thyroid disorders. My inspiration, though, comes from my oldest son – with his heart of gold – who believes that we all make choices to either help or not to help. As for me, like him, I choose to help.
– Blythe Clifford aka Thyroid Mom