Poppy
Poppy is battling Ebstein's Anomaly.
We found out that Poppy was going to have a moderate to severe case of Ebstein's Anomaly while I was pregnant. She was born in April 2023 and spent the first month of her life in the NICU and the next six and a half months at home before our world turned upside down. She got RSV on January 6th and has had many complications since then. She had a modified Starnes, BT shunt, right atrial reduction, and AP collaterals coiled on March 7th. She has a long road ahead of her and is still inpatient. Her first birthday is approaching, and even though she will still be in the hospital, it will still be a very special day. She has a big sister, Eden, who misses her so much, and we all can't wait to be home together again. The best way to summarize what this experience has been like as a hole is a poem by Emily Perl Kingsley called Welcome to Holland. I'd recommend any parent of a child with a disability read it. Talking to fellow parents in similar situations has helped so much, as have support groups and even therapy. Having a child in Poppy's situation isn't easy, but if you have the right tools and resources, it can lighten the load.
-Poppy's Mom, April 2024-
Henry
Henry is battling absent pulmonary valve with
intact ventricular system.
Henry is a 9-month old with an extremely rare form of complex CHD: absent pulmonary valve with intact ventricular septum. You can try to Google it, but you won’t find much!
We found out his heart was “gravely sick” during our 20-week anatomy scan, followed by an urgent fetal echocardiogram the next day. The pediatric cardiologists were worried Henry would develop hydrops fetalis and die in utero, and we went in for echos every two weeks for the rest of pregnancy. We knew that if he made it to birth, he might have two options. 1. A unique surgery to plicate his pulmonary arteries and input a BTT shunt, which would then put him on the single ventricle path. 2. A heart transplant, if he was a candidate. And, if neither of these options panned out, we would hold him until he passed away. They couldn’t say for sure until he was born.
You can’t really prepare for something like this, but we tried our best amidst endless grief and fear. We met with the palliative care team, learned all we could about kids with critical CHDs, and built up our support system for our older son. The support of friends and family, the prayers, the hope—they carried us through.
Henry was born in August, the same day Miles was born. We held him for a moment before the NICU team whisked him away to assess him. Miraculously, he breathed on his own for a few minutes before his sats dropped drastically and he needed to be intubated. His first echo was promising, and the team said he was a candidate for surgery. For three days, Henry was on every ventilator available in the NICU and was declining rapidly. The cardiology team said his surgery couldn’t wait, and they operated on day three of life.
Henry’s first surgery was a success! He spent two weeks in the PICU slowly coming off the breathing tube. After two more weeks on the medical floor, Henry had learned to eat by mouth and breathe without support. He came home with us after 31 days in the hospital!
Henry’s interstage period was rocky, with two unexpected hospital admissions and a host of issues with his incision, digestion, and sats. But, in between those stays, he lived a normal life with his parents and big brother. Seeing him do “normal baby” things like riding in the stroller outside was the most precious part of that time period. Henry went in for his Glenn at the end of November (a week before Miles had his Glenn!) and that’s when things got much messier. The operation itself was a success, but Henry struggled to be extubated. After a terrifying couple of days during which he became hypothermic, suffered from a severely low heart rate, and displayed criticality low blood pressure, the team threw everything they could at him to help. He ended up responding to antibiotics, and slowly weaned off the ventilator after 8 days. We spent 3 weeks in the PICU, followed by 2.5 weeks on the medical floor, where he acquired NEC and a blood clot. This experience was horrific for Henry and our family, and was even more challenging because Miles was suffering and declining at the same time.
After spending Christmas in the hospital, we brought Henry home once again. Home wasn’t the same, though. We gave Henry medications seven times a day at very high volumes. We were on clot watch and monitoring for symptoms of withdrawal. But, he powered through it and so did we! On his toughest days at home, Henry would surprise us by rolling over for the first time or giving us his first laugh. Since the Glenn, Henry has been hospitalized twice more: first for severe GI troubles and then for RSV. Now, Henry has been home for a month and a half with no hospitalizations (knock on wood!) and is doing extremely well. We simply adore him.
Like all kids with complex CHDs, Henry’s future is uncertain. His next surgery, the state of his lungs, his development are always in question. But, he is so deeply loved. Henry’s body is strong, and even at his young age it’s clear that he has the personality of someone who can overcome immense obstacles. When he’s not in pain, Henry is the happiest baby! His full-face, gummy smile lights up the room and he’s genuinely thrilled to meet new people every chance he gets. He loves his big brother, his dog, and his whole family. We’re grateful for miracles of medicine, the support of our community, and the opportunity to give him the best life possible!
-Henry's Mom, May 2024-
Emmett
Emmett is forever 11- months old. He battled Ebstein's Anomaly.
Emmett was born on September 20, 2023, with severe Ebstein's Anomaly, requiring immediate medical attention. He was life-flighted to St. Louis Children's Hospital about 2 and a half hours from our home. We also had a one-year-old at the time, making it extremely hard for us to leave him back at home with family and go be with Emmett. It was devastating leaving him each time, but we knew how much Emmett needed us. He underwent his first open-heart surgery at five weeks, which was longer than anticipated due to his heart compressing his lungs and airway. The cone procedure was attempted but failed, and he underwent the Starnes procedure, starting him on the single-ventricle pathway. After about 2 months of being bedside, we were finally able to get into the Ronald McDonald House and have Oliver with us! After several months, Emmett transitioned to the Transitional Care Unit, where he weaned off oxygen support, medication infusions, and tolerated full NG feeds. We got to enjoy the little things! We were able to administer all medications, get him out of bed alone, and even enjoy the sunset from his hospital room overnight. However, the time was coming for his second open-heart surgery. Emmett faced breathing difficulties after his second open-heart surgery (Glenn procedure) on April 1st. Despite efforts to manage his condition, Emmett has continuously deteriorated since the Glenn. Emmett's team discovered high Glenn pressure and high collateral burden after his first post-Glenn Cath, and it has continued to increase, causing more issues each time. His last Cath recovery was very poor. It was discovered in the last Cath that Emmett had no flow through his Glenn pathway; it was solely collateral vessels. St. Louis has exhausted all options to lower the pressures, reduce his heart size, and collateral burden. There is no surgery to reduce his heart size or pressures. Emmett's team reached out to multiple facilities, including Boston, Mayo, Pittsburgh, Houston, and Cincinnati, but only Pittsburgh offered a potential solution. Unfortunately, UPMC denied Emmett's single-case agreement due to insurance network issues. Emmett's pressures continued to rise dangerously high, and he was denied again by UPMC and Mayo due to those pressures. His insurance will cover any inpatient stay and transfer to a facility with a potential solution. Emmett's team is discussing a VAD and heart transplant, but eligibility is uncertain. Emmett's family is working hard to find a solution and prove his potential.
-Emmet's Mom, August 2024-
Berkley
Berkley is battling HLHS.
At our 20-week anatomy scan, we were sent for more testing t MGH where Berkley was prenatally diagnosed with Hypo Plastic Left Heart Syndrome (HLHS). We weren't sure what our future or our little girl's future was going to look like. Thankfully, we live in the best area of the country, where the medical techniques and advancements are a short drive away in Boston. Her care team at Boston Children's Hospital has exceeded our expectations. They took plenty of pictures of her heart before she was born. She underwent her first open-heart surgery at just 3 days old and completely rocked it. She had a long recovery complicated by a failed extubation, a G-tube (feeding tube) surgery, and a paralyzed vocal cord. We knew she would have at least 3 surgeries in her life, the second one coming between 4-6 months old. She got an MRI and a cardiac catheterization pre-surgery and developed an occlusive blood clot in her right leg from the cath. She had her second open-heart surgery on June 14th, 2024 to perform some repairs to hopefully lead her down a better path than the "typical" surgery plan for HLHS. Currently, she is reintubated as she had some trouble clearing carbon dioxide from her lungs. The helplessness that we felt watching her recover is a pain I wouldn't wish on anyone, but we know we have a strong girl. Our journey is far from over, but we have a little heart warrior on our hands who is strong and mighty. We are recovering well and are almost home from this procedure.
-Berkley's Dad, September 2024-