‘When they laid him on my chest, I was completely silent.’: Rainbow baby with rare genetic condition helps mom find new appreciation for life

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“When I found out I was pregnant with my son, I was absolutely overjoyed. This was our rainbow baby, our miracle, the sibling we dreamed of for our daughter, and the baby I’ve dreamt of holding in my arms for so long. Since we had a miscarriage in September of 2018, when we found out this baby was due in September of 2019, I felt certain it was a sign things would go well this time. It was the news I prayed so hard for. How could anything go wrong?

A pregnant mother stands in the bathroom
Courtesy of Victoria Godfrey

On September 11th, 2019, I gave birth to our son, Wesley. He didn’t look like my daughter, he snorted instead of cried, and he was very small for being 8 days late. When they laid him on my chest, I was completely silent. I didn’t want to believe there could be something wrong with my baby. No one said anything, but I knew there was a problem based on what felt like silence in the room. I held him against my chest while I looked up at the ceiling, and felt like I was living in a nightmare.

The doctors ran blood work and found his platelets were only 15! Platelets are what help your blood clot so you don’t bleed out. They should be 150-400. Them sitting at 15 was incredibly low and life-threatening, especially for a newborn baby. It could have easily caused spontaneous internal bleeding, but by some miracle, Wesley came out with hardly a bruise. I watched my baby boy as he got his first platelet transfusion, so confused and scared. I didn’t even care about the pain I felt from just giving birth, I had bigger problems. That’s when they sat me down and said, ‘There’s a very good chance he has a genetic condition. Something sort of like Down Syndrome, but not quite.’ We needed to take him to a children’s hospital about an hour away to be evaluated further. At the time, I had no idea about genetics or ‘syndromes.’

Our problems were bigger than just low platelets and a genetic condition. Brain defects, heart defects, kidney defects…the list has only grown as time went on. However, our biggest problem was and still is his bone marrow (specifically his platelets).

A baby boy lies on his back in the NICU
Courtesy of Victoria Godfrey

At the time, we didn’t know what was happening or what ‘syndrome’ it was. My whole family was just as shocked, some were in denial, some were strong. All we did was pray for him and for strength. I mean, it can’t be that bad right? Not my baby. But, if it is that bad, how can I manage to raise someone with disabilities? I honestly felt like I did something wrong and didn’t want to leave the house. I doubted my abilities to parent him, I was just a total mess. So was his dad, but our family and friends remained very hopeful and were honestly our biggest supports through this. They kept me going and helped us walk this extraordinary path.

Finally, we had an answer. I found out he had something very rare. I am not sure if there’s anyone else currently alive with it, however, I know there are probably about 100 or so with very similar conditions. That being a deletion of 21q21.2-q22.12. We call it 21q partial deletion syndrome. Ironically, ‘something like Down Syndrome’ turned into something that was technically sort of the opposite. A deletion on the 21st chromosome rather than a duplication.

The really bad thing aside from everything else about this condition was the fact the RUNX1 gene was affected. With that, we were told he had about a 40% chance of developing cancers like MDS (Myelodysplastic Syndrome) or AML (Acute Myeloid Leukemia) in his lifetime, and it explained his continued low platelet count (that required frequent transfusions and worry). That. Was. Heartbreaking.

A little boy wearing a feeding tube
Courtesy of Victoria Godfrey

After the first few months and after all the initial shock, grief, and sadness (and so on!) associated with finding out my child had disabilities with all these major risks, I realized it was something I could manage. I mean, it’s unfair, it’s heartbreaking, there are endless emotions and some really bad days, but there was also so much to take from it. Besides, that’s my baby boy. Every milestone he made was like winning the lottery. When he started smiling, oh, that won my and everyone’s hearts over! He smiles through everything! He is a light, an inspiration, a reminder of how precious and beautiful life is. I honestly was so lucky to have friends and family who accepted him for who he was and who helped give us a little normalcy! I truly believe he helped everyone around us, and especially me, appreciate life a little more. He is a miracle boy!

A baby boy sits next to a fox backpack
Courtesy of Victoria Godfrey

Come September (go figure) of 2020, all of our lives changed, and it wasn’t great. We got admitted to the hospital for intolerance to anything going through his gastric feeding tube, he puked constantly, and that’s when we found he had an ileus. Worse, we found out he was now anemic (currently resolved). We found his platelets were worse, too, and on top of it all—we were living in a global pandemic, and no one could visit. Not even my daughter. I have never felt more alone, but that was only the beginning of our 201-day admission, and the hardest time in my entire life thus far.

There was so much that happened during that admission, I watched my baby boy get sicker every day. I was too far away to see my daughter and family often. Surgery after surgery trying to get him to feed through different types of feeding tubes without complications, ICU stays, all while trying to accept the reality that my son may have cancer. Yes. On top of everything else…cancer. But, I saw him recover from sepsis so many times, I thought surely he could get treatment for this and survive if it was cancer. I was holding onto hope.

At one point he was getting platelet transfusions almost weekly because of bleeding and red blood cells maybe once a month. I was starting to feel desperate for answers as to why. That’s when we found out he did in fact have a type of blood cancer called myelodysplastic syndrome. MDS for short. It will eventually progress into AML, which is a very scary type of leukemia that causes a quick decline (acute myeloid leukemia). MDS is sort of like what happens as your bone marrow turns cancerous and is extremely rare in children. We were told the only treatment for him would be a bone marrow transplant. I kept holding onto hope again that we would find a match, and that he’d survive treatment. I knew how fast AML could take someone’s life, so I was always so anxious to get things going and just save his life.

Just before Christmas, we met with the bone marrow transplant team virtually from a specialist children’s hospital and got the worst news any parent could ever receive. He was not eligible for treatment, and he had only weeks, months, maybe a year or so left to live. There are no words to properly explain the grief I felt, especially finding out and having to somehow call my family and friends and explain the news. I will never forget the social worker literally walking me back to the Ronald McDonald House where I was staying that day so I could make those calls, and I will never forget my two friends driving up to comfort me.

A little boy in a stroller and his sister
Courtesy of Victoria Godfrey

On top of that diagnosis, we were still trying to get him off TPN (nutrition through IV). He developed so many infections from having PICC lines, we were afraid it would kill him before the cancer did. I lost hope. I had never felt worse in my entire life. Suddenly, one surgeon had an idea—a way to give him a feeding tube that would surely work. It was another J tube (it goes directly into the small intestine), but this time, they sewed his intestine in place as well, and it worked! After over half a year we finally were on our way to getting off TPN and being able to go home again. We left March 24th after 201 days admitted, and I have to admit, it was incredibly bittersweet.

The first few weeks home were absolutely life-changing. I finally had the freedom to do what I could with him which was a major relief, and I finally had time to reflect on our journey thus far. I know our future is unknown, in fact, every day is a new journey and there is seemingly always some bump in the road, but I vow to make the best of each and every day. Even the hard ones. I understand things can change at any time, I know we don’t have forever, but I will always hold onto hope. This journey will forever have changed my life.

A little boy dressed like a superhero
Courtesy of Victoria Godfrey

You never really think these things can happen to you, but they can happen to anyone. As hard as that is to digest, it’s just a reminder that our lives are a gift, and we are so lucky to have them. Please, I encourage anyone reading this to make the best out of your life! Run the extra mile to make someone’s day and push yourself to be the best version of yourself. Don’t take a single day for granted!

Wesley and I are spending our days with family and friends, going on adventures, and his dad, grandma, and I even planted 10 fruit trees in his honor (thanks to the support of our community). We are extremely blessed for his current health and for his life. We are blessed to have each and every day and I pray we have many more days. It won’t be easy, but if there is one thing I want to be able to say for certain at the end of the day, it’s that I did my best always given the circumstances, and loved with all my heart. No matter what happens, I will live with no regrets, and I will live in honor of the strongest little boy I have ever met.”

A little boy is held up by his mother in the snow
Courtesy of Victoria Godfrey

This story was submitted to Love What Matters by Victoria Godfrey. You can follow her journey on Instagram, Facebook, and Tiktok. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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