NAIT Awareness Week: Our Story

This past Friday kicked off NAIT Awareness Week 2016. Our Levi was diagnosed with NAIT several hours after birth and spent weeks in the hospital for treatment. Since it’s a lesser known disorder, I wanted to share our story in hopes that others can be informed and feel less overwhelmed if they should ever receive the same diagnosis. There’s more of us out there than you know!

I started to write this post many many times but kept having to start over because honestly, almost a year later, I’m still full of questions myself. For starters, I’m sure most of you are probably wondering what the heck NAIT is.

The Story of Our NAIT Baby

Our Levi was diagnosed with NAIT hours after birth and spent weeks in the hospital for treatment. Since it’s a lesser known disorder, I wanted to share our story in hopes that others can be informed and feel less overwhelmed if they should ever receive the same diagnosis. There’s more of us out there than you know!

I started to write this post many many times but kept having to start over because honestly, almost a year later, I’m still full of questions myself. For starters, I’m sure most of you are probably wondering what the heck NAIT is.

What it is: (from my understanding)

Neonatal Alloimmune Thrombocytopenia (NAIT) is a rare genetic blood disorder.

Very VERY basically, this is how it works: A baby draws one HPA (human platelet antigen) from each parent when forming. When a mother and father with differing HPA types gets pregnant, the mother’s body sees the baby’s antigens as “foreign” and responds by producing antibodies against these intruders.  In our case, Zach is HPA 1a/a (which is most common) and I’m HPA 1b/b (rare) so Levi is HPA 1a/b. My immune system treats the antigen Levi got from Zach as a foreign body and develops antibodies that attack the baby resulting in low platelet counts. 

Antibodies, an important part of the body’s immune system, may cross the placenta, enter the baby’s bloodstream and destroy the unborn baby’s platelets. Platelets circulate in the bloodstream and are important in preventing and stopping bleeding. The low platelet count can lead to brain hemorrhage, stroke, bruising, petechiae, brain damage and death

You can read a more in depth explanation HERE.

NAIT

Shortly after Levi was born, I noticed that his tiny little body was covered in large bruises and red dots. Turns out those red dots are called petechiae and are caused by bleeding into the skin. When I looked closer, I realized that there were also burst blood vessels in his eyes even though we didn’t have a “hard” delivery. I remember repeatedly asking the nurses if the dots were normal since it seemed abnormal, but no one really answered. Several hours later, Levi’s pediatrician came in for his new baby check-up and asked about the petechiae and if delivery was difficult. I KNEW I wasn’t imagining things and the only one seeing them! When I said no, she told me he needed to be taken immediately to have a platelet count done and he was whisked away.

In the picture above, you can see the bruising around his nose and mouth along with some petechiae on his forehead and face. The majority of the petechiae and bruising were on his back, abdomen and scalp.

Finally, after what seemed like forever, his platelet count came back. It was 7,000. Just as an FYI, a non-affected baby typically has a platelet count between 150,000 to 400,000.

It took a week for the NICU at Hospital #1 to diagnose Levi with NAIT.

Early on in his treatment, the doctor on duty the majority of the time we were there, we’ll call him Dr. H, told us platelet transfusions would work to bring up him platelet number. It seemed like the right thing to do- platelet numbers are low- give him platelets to help bring them back up…so started the first roller coaster week of platelet count ups and downs. The numbers would sky rocket, giving us hope and them plummet in the same day, right back to where we began. After a week this just didn’t seem right.

When we tried to discuss it with him, he would continue to tell us this was the right thing to do and then say he was busy so he couldn’t discuss it any further. Of course when the NICU doctor tells us he doesn’t have time to talk with us, we would back off…there were other babies that seemed much worse off that we figured he needed to tend to. We wouldn’t never want to get in the way of that. Then he only started sending nurses out to relay messages and we stopped seeing him all together… When you’re in such a vulnerable position such as we were, you want to trust the doctors. The diagnosis is something you have never heard of in your life or thought possible, and you believe that they know how to help your child. They assure that they do. And they’re the experts right?

Fast forward to day 10 in Hospital #1 and 24 platelet transfusions later.

This was a turning point for us. We needed answers. While we wanted to trust his doctor, the fact that Levi wasn’t any better than day one was glaring at us. We had many false platelet growth counts that strung us along, but Levi’s most recent platelet count had come back as 8,000. How many more transfusions and scans would he need? We had been told this would work.

Of course, we understood that not everything goes according to plan (Levi’s diagnosis, was a lesson in that) but this just seemed absurd. They were preparing another platelet transfusion for Levi but it seemed redundant to do it again. We wanted to know why we weren’t trying something else when we had read about other options on the National Institute of Health’s (NIH) website and this one clearly wasn’t working.

I put in a request to talk to Dr. H with the nurse. Per usual, he was too busy to talk but I sent word back that I would wait as long as it took. Hey, I’d be there all day anyway right?

When he finally made an appearance, he didn’t try to hide his look of pure annoyance. Because of his attitude, I started feeling less confident, wishing that Zach was with me since I’m not confrontational. He impatiently asked what I wanted (like having my baby as one of his patients wasn’t reason enough).His demeanor was a bit shocking but he never did have the best bedside manner, so I forged on. I needed to know what changes were going to be made to the care plan. Levi had been there for almost 2 weeks and the 24 transfusions didn’t make a dent in his condition. He responded that there was nothing they could do but continue the transfusions.

Huh?

But what about the other treatment options we read about from the NIH? Why weren’t they an option for us?

So I asked him and the response was “That doesn’t work.”

What?!

I just couldn’t handle it anymore. I hadn’t cried since Levi was initially taken away but I couldn’t hold it in any longer.

Without another word, he turned and walked away leaving me crying in a the hallway. Of course I called Zach right away asking him to get to the hospital immediately.

I don’t ever cry. But the two weeks of uncertainty and anxiety opened my eyes like flood gates.

All I kept thinking was that this doctor hadn’t even bothered to look up the damn thing. He literally had NO idea what he was doing and for 2 weeks I had let him be in control of my child’s life because we trusted the degree behind his name. I felt so guilty. That I had failed Levi by not making the right decisions.

After what seemed like forever, Zach arrived. I had managed to pull myself together and together we decided to speak with the doctor again. We wanted to come to a resolution since Levi still didn’t have a new care plan. And if that meant switching hospitals, then so be it. We were starting to think he didn’t know how to treat NAIT at all. As a doctor, if you don’t know how to treat it, that’s understandable. It’s not your average NICU problem, but please, please send him to a place that does.

Round 2…FIGHT

We requested to speak with him again. Dr. H came stomping over visibly angry at us and told us to make it fast. You could hear a pin drop (I swear even the machines went quiet). Zach did such a good job being diplomatic at that point. He asked him the same questions I did. Received the same responses. But instead of losing it, he asked him why he thought it wouldn’t work when it’s protocol developed by the National Institute of Health. To that he had no answer so Zach asked if we could do an IVIG transfusion. Turns out, he didn’t actually know what it was but said he said he would try to look for it. He then told Zach to write down what we wanted him to do.

Yes, you read right. The doctor who insisted he knew what he was doing and exactly how to treat NAIT asked US (the non-medical practitioners) to write down the treatment because he’d never heard of it. The same treatment he claimed earlier would definitely not work. How could he tell us it wouldn’t work when he didn’t even know what it was?

Thinking the same thing, Zach just turned to the head nurse and asked her to arrange transportation to the children’s hospital ASAP. We were done waiting around when Levi’s platelet count was so dangerously low. We weren’t going to have Levi be a guinea pig. The nurse quietly said she thought we were doing the right thing. Thirty minutes later, Levi was tucked away in his hyperspace tube (seriously, has anyone else seen one of those NICU transport pods?) and on his way to the new hospital.

The New Hospital

The hospital change was the best decision we ever made! They had a neonatal hematologist who knew exactly what NAIT was and developed a care plan accordingly. Levi was immediately given an IVIG transfusion and his numbers started rising immediately. His platelet count never looked back after that!

Every doctor we had was caring and took the time to call us every morning to update us on Levi’s status. They openly communicated their thoughts on his treatment and how it was going. I’ll never forget that morning call when they told us that if his numbers had risen at his next platelet count, he could come home.

Zach holding Levi while waiting for the discharge paperwork…Almost free!

At the new hospital, he was treated and home after only 3 days!

Nowadays, Levi is a very healthy and active little boy! Constantly on the go and keeping me busy 🙂 We are so blessed to have him. Every time I look at our miracle NAIT baby, I’m nothing but grateful that he survived. He not only survived the pregnancy, but also the first terrible hospital stay without many complications, despite the poor care.

As new parents, we learned a lot of lessons from Levi’s time in the hospital. If something doesn’t feel right…second guess it! Ask questions and demand answers. You are entitled to them and YOU are your biggest advocate!

P.S. If you want more information on NAIT and access resources, please visit naitbabies.org!