Meet Henry

Born to Reign

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Hi. Meet Henry. He’s a typical 4 year old in many ways and yet completely unique in his own way. He’s a people person, loves music, dancing, swinging, playing with his sisters and cousins, walks in his wagon, building legos with dad, playing with tools,  rides in Dad’s truck, and is currently fascinated with stop signs and ceiling fans. He enjoys classic movies like Disney’s Robin Hood and the Wizard of Oz and gets a kick out of Handyman Hal and Blippi. He’s weathered more storms in his four years than most will endure their entire lives. He loves his two sisters so stinking much, and they’re the best to him. He is happy. He brings us joy. He reminds us it’s the simple things.

When Henry was born we spent the afternoon admiring and snuggling our new babe, enjoying that parental bliss, without a clue what was coming our way. That evening following the exam of the pediatric NP, Henry was transported to the NICU in a neighboring city due to issues with keeping his oxygen levels up and presenting some signs of a genetic disorder called Marfan Syndrome. In a complete state of shock, the doctor discharged me from the hospital so that we could follow Henry and the NICU transport team. Upon arrival Henry was seen by the pediatric doctor, respiratory therapist, nurse practitioner and several nurses. He was given an IV and hooked up to oxygen. His stats stabilized and we tried to settle in for the night with more questions than there were answers.

The next morning Henry was given an echocardiogram and was seen by a geneticist. After the geneticist’s assessment she relayed that she believed Henry had Marfan Syndrome and ordered genetic testing to confirm the same. Following the echocardiogram, the pediatric cardiologist determined that it was very likely Henry has Neonatal (or early onset) Marfan Syndrome. This was later confirmed with genetic test results. Henry’s heart was significantly affected at birth. The aortic root of his heart was dilated and he already had an insufficient tricuspid valve.

I think I can safely speak for most parents in that hearing a doctor utter the words that the life expectancy of your child is 1-2 years is a parent’s absolute worst nightmare and hits you like a semi truck barreling down the highway. It takes your breath away and you find yourself continually thinking you’ve got to wake up from this nightmare at some point. This can’t be real. I recall searching the internet as soon as we heard the doctor’s initial suspicion to learn what we could and the information was scant and the outlook was bleak. That coupled with the doctor’s prognosis left little room for hope.

However, by some miracle, the pediatric cardiologist at the hospital was currently treating a 13 month old with the same disorder.  Not only was he treating another little boy, but they happened to be at the hospital same time as the little boy was awaiting his first heart surgery.  That family was gracious enough to meet with us and introduce us to their little hero and share with us their experience in coping with the disorder so far. That meeting gave us hope and that meant everything.

Henry’s journey has been marked with many battles and triumphs. Life with a child with Neonatal Marfan Syndrome varies from family to family as the disorder seems to affect everyone differently and along a wide spectrum. No matter where your child may fall on the spectrum of severity, it’ll likely be different than what you had dreamt of for your child’s life. There will be difficulties and obstacles you didn’t plan for or envision, but it will certainly be worth it.

His resilience, along with the resilience of his fellow Neonatal Marfan comrades, is nothing short of inspiring. His tagline, Born to Reign, is derived from a nickname one of his doctors gave him, King Henry. Even at 8 months old she saw his wisdom and old soul shining through. He commands attention wherever he goes, not solely because you’ll always know what he wants , but because of his curiousness, comedic timing and quick whit.

If we as parents had advice to give to other parents of children who are affected by Neonatal Marfan Syndrome, I can think of a few things:
 

• First is one of the things the family we met conveyed to us. That is, how important it is to take each obstacle, each triumph one day at a time. It’s easy to look ahead to what the future may hold and be completely overwhelmed and debilitated by the complexities of this disorder and what it means for your child, your family, but in order to give these miracles their best life we need to focus on the here and now.

• If you have family, a village, friends to lean on for support, do it. Take the help and don’t be afraid to ask for it either. We are so grateful for our village of help.

• In addition, advocate and educate. Reach out to support groups available, their knowledge, experience, connections and advice is truly priceless. If any of your child’s doctors, specialists, or therapists are not knowledgeable about the diagnosis and are willing and eager to learn, connect them directly with the Marfan Foundation. Don’t be afraid to move on from a doctor if you feel they aren’t a good fit.

If you’d like to read about some of Henry’s significant procedures, follow this link:

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Dated: 17 February 2025​​

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