Miracle Weekend - Henry Brown
Parents of Henry, Miranda and Chris, submitted their story through our website. Throughout Miracle Weekend we'll be sharing the wonderful things that happen every day at BC Children's Hospital and around the province. Submit your story through one of our social media channels, or at bcchf.ca/share.
Imagine you have just given birth, twice, in one day. You are exhausted and thrilled, your twin boys resting comfortably with you when your Doctor pops in to do a little check. The next thing you know, one baby has been whisked away, a small heart murmur detected, for a quick test. Within moments the whole scene changes. You are told that your baby’s blood is mixing and he needs to be seen by a Pediatric Cardiologist immediately. You are being flown to Vancouver. And you have no idea what any of it means. “Can he die,” you ask? “Yeah, he can,” is the reply. And then you are out the door.
Twenty-four hours later, you still haven’t even showered, your baby is in one hospital, you are in another, nursing your other newborn and trying to get your bearings. Your one-day old son, Henry, is in grave danger. Born with a heart with just three chambers and completely lacking a pulmonary artery, the only thing keeping him alive at the moment is a drug to keep the heart and lungs connected like that of a baby still in the womb. And you know it’s only temporary.
Five days after this traumatic day Henry was having his first open heart surgery, a three and a half hour procedure to secure a shunt, in the hopes they could buy him some time to get bigger and stronger and more prepared for the eight hour open heart surgery that he would require to place an artificial pulmonary artery.
At 4 weeks old Henry was sent home to wait for his next procedure. Henry had a rough go over the next 3 months. Unable to eat, lacking energy and even colour, he was failing to thrive. His twin brother, Seamus, was surpassing him in every way. After several months of continual dips in oxygen levels, trips to the ER, and admittances to the local hospital, the decision was made to place the artificial artery and to place a patch over the hole in his ventricle, creating the required four chambers, at once. Eight hours later, we were able to see our son in recovery. I walked right past him, unable to recognize him, because he looked so different. The change in his colour was immediate. He was pink, darker even, and we had never seen him that colour before. I didn’t even realize it was him.
Finally, Henry’s heart was able to get oxygenated blood through his body. Henry has returned home. He is thriving and growing and always smiling. This artery will hopefully last him anywhere from 12 months to three years. He will require more open heart surgeries throughout his childhood to replace this artery. But his story doesn’t end there. He has required additional surgeries and has many tests and procedures to endure as the mysteries of why Henry’s heart was misshapen continue to unravel. Henry has vomited every day of his life for 18 months multiple times a day. He is 100% G-tube feed, Henry's team of doctors are still trying to unravel why he is coming. Henry is back at BCCH in June for another surgery.