This post was submitted by Hudson’s parents, Tori & Theodore DeMartini.
We went into our 20 week ultrasound not expecting anything unusual. When the sonographer was spending a lot of time looking at the chest and we noticed a lot of black where the heart should be my wife asked the sonographer if something was wrong. She said, “Yes, it looks like hypoplastic left heart.” It took the remaining months of the pregnancy to grieve for the fact that our son Hudson would be born with half a heart and to prepare for what came after birth: open heart surgeries at 5 days, 4 months, and two years. Between the first two surgeries there were feeding difficulties, weekly visits to the cardiologist, and the constant terror of sudden death. Not once did I approach Hudson while he was sleeping and not steel myself to find him dead.
After his third surgery (plus another chest exploration to wash out an infection) we were home to finish two weeks of IV antibiotics and then on to normal life. We knew other families who had been able to get to the magical “1 year between follow-ups” and hoped to soon follow. We had just moved to Pennsylvania and it felt like our hardships were behind us. Then, six months after his last surgery Hudson seemed more tired and he was starting to get puffy.
We were admitted to the hospital and his echocardiogram showed that his heart function was severely decreased. He was started on a medication, milrinone, to help his heart contract more strongly. At the time we hoped that this was just a temporary issue due to an acute illness. After a few weeks in the hospital on milrinone his function was better, but still far from normal. The plan was made for Hudson to go home on milrinone and list him for transplant.
Milrinone is an IV medication that must be given continuously, which means that Hudson is always hooked up to a pump. He wears it in a back-pack when he is awake and it lays in his bed with him when he sleeps. It sits beside him when he rides in the car and lays on the floor when he is in the bath tub. At two and a half years old Hudson knew to straighten his arm when it started beeping due to the tube being kinked. The special IV (“PICC”) required for the medication is fragile and has broken twice requiring hospitalization for replacement. Any fever must be considered a blood infection from the IV and requires hospitalization for antibiotics. While we try to let Hudson and his six-year-old brother Julian be normal brothers we have to be careful that rough-housing doesn’t lead to a broken or dislodged PICC.
If there ever was a child who was made for these challenges, it is Hudson. He is strong and brave, but also unimaginably sweet. He says please and thank you and sorry and you’re welcome when 95% of adults wouldn’t think to do so. From the time he was a newborn in the hospital he would watch and engage with others and connect in a way that I have not seen any other baby do. When it is time for an IV or a shot Hudson will cry and let you know he doesn’t like it but he has never held a grudge against any nurse. He takes five terrible tasting medications twice a day and doesn’t make a peep about it. His twice daily Lovenox shots have made his legs bruised and knotted but he is up and running the second the needle is out.
I don’t think anyone who met Hudson would have a clue that he is on the list for a heart transplant. He goes to daycare and runs and tells stories like any other three-year-old. He is a chatter box and his language has exploded since he was started on his Milrinone. Hudson loves to play with Julian, is obsessed with my “race car” (a rusty old Ford Escort that I occasionally tinker on), and will give hugs to any person or animal within reach.
This has the effect of creating a cognitive dissonance where I look at my three-year-old boy who is doing 90% of the things that he should be doing (albeit with a backpack) and then remember that his heart is, at best, moderately dysfunctional. We always knew that Hudson would need a transplant at some point but we never thought it would be so soon. After six months we know that our earlier hope for recovery was likely in vain and that a transplant is what he needs. If Hudson could have a PICC and a little back-pack for the rest of his life, we would choose that in a heartbeat (if you’ll pardon the pun) but we know better. Hudson needs a heart transplant so that he can keep being the wonderful little boy that he has already become. He needs a heart so that he can continue to be clever and funny and heart-breakingly sweet. Hudson needs a heart because he has done so much with just a half that I can’t imagine what he would do with a whole.