Washington mother gaining awareness for congenital heart defect
Photos courtesy of Jeri Vitteck
Rylee Baker has more than 800 beads, signifying everything she endured during her long hospital stay, from IVs to blood transfusions. The beads are from Beads of Courage, a program by Children’s Hospital of Pittsburgh Child Life Department, that allows children with chronic illnesses to tell their story utilizing colorful beads to symbolize milestones achieved along their treatment path.
Rylee, held by mom, Jeri, with siblings, from left, Tavian, Kaiydenz and Tyler. The kids decorated Rylee’s hospital room with photos of the family and drawings while they were separated.
Jeri Vitteck credits Dr. Victor Morrell, pictured, with saving her daughter’s life.
Rylee laughed for the first time on Christmas. “It was major,” said her mom, Jeri. “We had never heard her laugh before.”
It’s been almost a year exactly since Jeri Vitteck received the news that would change everything.
On Feb. 13, 2017, Vitteck, a Washington resident, was in her second trimester of pregnancy and scheduled for a routine sonogram.
The technician went through the steps, allowing Vitteck to see a picture of the baby in the womb, then told her it would take a little longer than expected. The technician left the room and came back in after a few minutes.
“‘I’m not seeing all four chambers,'” Vitteck recalled her saying. “I didn’t understand. I just wanted what everybody expects. I never expected to go in and be told life-changing things.”
Vitteck was given an appointment for a fetal echocardiogram the next week, when she was told her baby’s heart was not fully developed. Hypoplastic left heart syndrome (HLHS), it was called. It meant the left side of the heart was severely underdeveloped, causing the right side of the heart to take on the duties of the left. Without intervention, the heart quickly fails. Even with intervention – treatment includes a series of open-heart surgeries, called the Norwood, Glenn and Fontan, or a heart transplant – the syndrome requires lifelong care.
“I had to make life-and-death decisions,” said Vitteck. “I was told I could have an abortion, or choose to have her without intervention, and she would only live 24 to 48 hours. So I could let her pass away on her own, or I could choose to let her have the surgeries. I didn’t understand because it’s not talked about. I wondered what I did wrong. They told me there was nothing that I could have done and that the heart starts to develop even before the first pregnancy test. They said so many times, CHD (congenital heart disease) is missed and undiagnosed. Only one-third (of cases) are detected during pregnancy.”
Vitteck was told that even if she chose intervention, doctors wouldn’t know until the baby was born if she could survive the first surgery.
The surgeon, Dr. Victor Morrell, asked Vitteck if she had any questions.
“I said, ‘I just want her to have life.’ And he said, ‘I can do it. I can mend it,'” Vitteck recalls. “That’s all I wanted to know.”
Her decision made, Vitteck tried to enjoy what ended up feeling like a very long pregnancy. A mother of three at that point, Vitteck had regular and frequent lab tests, fetal echocardiograms and appointments.
Loved ones threw her a baby shower, and she purchased tiny clothes that people told her the baby might not get to wear because she’d be in the hospital.
“I didn’t care. I bought them anyway,” said Vitteck. “A lot of times I wanted to be mad, but I thought, ‘I’m not, because I had an ultrasound and they caught it.’ So many (CHD cases) are missed. If it wouldn’t have been found, I wouldn’t have gotten five minutes or six months with my daughter. I wouldn’t have any time with her, so how could I be mad?”
On Feb. 13, it will be one year exactly since Jeri Vitteck found out the baby she was carrying didn’t have a fully-formed heart. Rylee was born with hypoplastic left heart syndrome, for which she spent 139 days in the hospital.
Rylee Baker was born July 7. At 5 days old, she had her first open-heart surgery. Rylee made it through, but had to remain in the hospital because the time between the first and second surgery is especially fragile.
The family, including siblings Kaiydenz, Tyler and Tavian, “pretty much lived at Children’s Hospital” throughout Rylee’s hospitalization. The kids decorated their baby sister’s hospital room with pictures and drawings.
“Sometimes, it was hectic. I always told them that we are a team, and I’m so amazed by how much they try or ask to take part in Rylee’s care – asking questions, knowing what her pulse ox(imetry) machine should say or not,” said Vitteck. “I would cry when I couldn’t be with Rylee, but I would also cry when I would have to be away from my kids. Half of my heart was with them and half with Rylee.”
On Oct. 5, Vitteck’s 32nd birthday, Rylee had her second open-heart surgery. Because she couldn’t take a bottle, she had a gastronomy tube placed in her stomach in November.
Finally, after 139 days, Rylee was released from the hospital and allowed to join her family at home. A nurse comes a few times a week, but Vitteck does most of her daughter’s care herself.
“There is such a shortage of nurses. We need nurses for cases like (Riley’s). I do everything, but some parents don’t have anybody,” Vitteck said. “I really need to work, but I can’t because she’s my number one focus, and I’m just thankful she’s here and we made it another day.”
Vitteck cherishes every milestone. At Christmas, Rylee laughed for the first time. A few weeks later, she got to attend a birthday party – her first outing ever, with the exception of doctor appointments.
Because Rylee had to be on her back for so long, she is a little behind others her age. She has to wear a helmet to reshape the back of her head and sees an opthamologist because her right eye doesn’t focus well.
“Everybody assumes everything is going to be perfect when they have a baby, but sometimes, you have to take a bad situation and make it perfect. We have to face hurdles everyday,” Vitteck said. “If we don’t crawl for nine months, I’m OK with that. She is a survivor. She’s beating the odds one heart beat at a time.”
Vitteck said she couldn’t have gotten through without family and friends, especially Rylee’s father, Jonathan Baker; her parents, Kellie and Brandon Lucy; and Jonathan’s father, David Baker. She’s also found an online community of support through her Facebook page, #RyleesJourney with a mended HEART CHD.
Now that Rylee is nearly 7 months old, Vitteck is raising awareness of CHD. Congenital Heart Defect Awareness Week is observed each year from Feb. 7-14.
“I want everybody to know that this does happen and 30,000 kids are born a year with CHD. Some are mild and some are very severe, like hers, and require intervention. There is a whole world of us supporting each other,” said Vitteck. “It’s listed as a congenital heart defect but these kids aren’t defects – there’s nothing broken about them. Their heart can be mended.”
Vitteck said she constantly encounters people, even those in the medical community, who have no knowledge of CHD.
“If a baby passes away during birth, it can be missed, or if they live a few months, people think it’s SIDS (Sudden Infant Death Syndrome.) CHD is grossly underfunded,” Vitteck said. “It kills more children than childhood cancer does or Sudden Infant Death. These children are in for a fight for their lives from the day they are born. They will always be fighting. Unlike cancer or anything else, we parents can’t hold a sign up at the end of our journey that says ‘I have been cured. I’m CHD free.’ You’re never cured, only mended.”
Rylee will require a third open-heart surgery, probably when she is about 2 years old.
“It’s not a cure. I feel like it’s just something that buys time. Though she’s fine now, she might not be in two years,” Vitteck said. “There’s a possibility of a heart transplant. We’re just here and just being thankful for every minute that we have. I hope Rylee lives to be 60 and doesn’t have to have a heart transplant. But, if she does, I’ll think about that when I need to.”
Vitteck is planning a spring fundraiser and is participating in the Seventh Annual Congenital Heart Walk June 23. For more information, visit www.congenitalheartwalk.org.