We first were diagnosed with Caleb's heart condition when we lived in Toronto. They have a wonderful and very huge hospital devoted to children called Toronto Sick Kids. Recently, I ran across this story of a baby who underwent a procedure at this hospital while still in his mother's womb! It was successful! The baby, had they not done this procedure, would have had to have the same three surgeries as Caleb.
Here's the text from the article and a
link to the online version.
(Toronto) – In a Canadian first, doctors at The Hospital for Sick Children (SickKids) and Mount Sinai Hospital successfully performed a lifesaving heart intervention on a baby in utero. A team of doctors, including Dr. Edgar Jaeggi, Head of the Fetal Cardiac Program at SickKids, Dr. Greg Ryan, Head of the Fetal Medicine Unit at Mount Sinai and Dr. Lee Benson, Director of the Cardiac Diagnostic and Interventional Unit at SickKids, expanded the baby’s aortic valve using a balloon catheter inserted through the mother’s abdomen while the baby was still in her womb to reverse the baby’s heart failure before birth. This allowed the baby to remain safely in utero for a crucial extra month.
"The fetal intervention was minimally invasive for the mother and lifesaving for the baby," says Ryan. "Our ability to repair the aortic valve at 31 weeks gestation allowed the fetus to grow and thrive for four more weeks in the mother's uterus, resulting in a bigger, healthier baby at birth with decreased likelihood of additional health risks. Had the baby been delivered at 31 weeks, the heart’s left ventricle could not have been saved. The collaboration of expertise between SickKids and Mount Sinai saved this infant's life."
Thirty weeks into her pregnancy, Vicki McKenzie, a mother of two from the Ottawa area, had an ultrasound indicating her baby, Océane, had a heart condition called Critical Aortic Stenosis, meaning there was severe narrowing of the main outlet valve of the left ventricle. She was immediately referred to Toronto, where doctors at SickKids and Mount Sinai offered her an experimental procedure.
The procedure is called Balloon Dilation of Critical Aortic Stenosis in the Fetus. Under continuous ultrasound guidance, doctors inserted a needle into the left ventricle of the baby’s heart through McKenzie’s abdomen; a guide wire was passed through the narrowed valve so the special balloon would open the valve leading to the baby’s aorta. In theory it was simple, but in reality it was an innovative and risky procedure. It has been tried in only a few centres worldwide; this was the first successful such procedure in Canada.
“It can only be offered to a few babies in utero who are detected at the correct stage and when their aorta hasn’t yet narrowed too much. This baby came to us at just the right time,” says Jaeggi.
Untreated, the condition would inevitably lead to a lifelong condition called Hypoplastic Left Heart Syndrome (HLHS). Children with HLHS typically need to undergo at least three major heart surgeries. Most children would not be expected to live a normal lifespan; the 10-year survival rate is only 65 per cent. This experimental intervention aims to repair the heart early, allowing it to recover its normal function to avoid risky surgeries after birth and hopefully lead to a longer and better quality of life.
McKenzie, who was prepared for anything, agreed to the intervention. Océane stayed in her mother’s womb for a full month following the procedure, until the team determined that she could be safely delivered on April 15.
Doctors anticipated that as soon as she was born, the baby would need to undergo another procedure to further open her aortic valve. Within an hour of her birth at Mount Sinai, Océane was stabilized and transported by Mount Sinai’s neonatal team to the Cardiac Diagnostic & Interventional Unit at SickKids, where she underwent another procedure. A third procedure followed a few weeks later.
“They have saved my daughter’s life. Having access to the expertise at these two hospitals was a comfort. I could confidently have my baby at Mount Sinai and know that she would immediately receive the urgent care she needed across the street at SickKids,” says McKenzie.
“The intervention recovered Océane’s ventrical function completely. It is operating at a normal level now. We hope this successful collaboration opens the door to giving other babies a healthier start in life,” says Jaeggi.
The Mitchell Goldhar Cardiac Diagnostic & Interventional Unit at SickKids enables Canada’s largest paediatric interventional catheterization program to develop innovations in minimally invasive alternatives to open-heart surgery. The unit, opened in 2007, combines the latest technology to diagnose and treat children with congenital heart disease using minimally invasive procedures that can reduce or eliminate the need for open-heart surgery.
The Fetal Medicine Program and Perinatal Program at Mount Sinai Hospital are among the largest in North America, and receive referrals from all across Canada for a wide range of fetal problems needing complex interventions.
About SickKids
The Hospital for Sick Children (SickKids), affiliated with the University of Toronto, is Canada’s most research-intensive hospital and the largest centre dedicated to improving children’s health in the country. As innovators in child health, SickKids improves the health of children by integrating care, research and teaching. Our mission is to provide the best in complex and specialized care by creating scientific and clinical advancements, sharing our knowledge and expertise and championing the development of an accessible, comprehensive and sustainable child health system. For more information, please visit www.sickkids.ca. SickKids is committed to healthier children for a better world.
About Mount Sinai Hospital
Mount Sinai Hospital is an internationally recognized, 472-bed acute care academic health sciences centre affiliated with the University of Toronto. It is known for excellence in the provision of compassionate patient care, innovative education, and leading-edge research. Mount Sinai’s Centres of Excellence include the Lawrence and Frances Centre for Women's and Infants' Health; Christopher Sharp Centre for Surgery and Oncology; Acute and Chronic Medicine; Laboratory Medicine and Infection Control, and the Samuel Lunenfeld Research Institute. For more information about Mount Sinai Hospital, please visit us online at www.mountsinai.on.ca.
(Toronto) – In a Canadian first, doctors at The Hospital for Sick Children (SickKids) and Mount Sinai Hospital successfully performed a lifesaving heart intervention on a baby in utero. A team of doctors, including Dr. Edgar Jaeggi, Head of the Fetal Cardiac Program at SickKids, Dr. Greg Ryan, Head of the Fetal Medicine Unit at Mount Sinai and Dr. Lee Benson, Director of the Cardiac Diagnostic and Interventional Unit at SickKids, expanded the baby’s aortic valve using a balloon catheter inserted through the mother’s abdomen while the baby was still in her womb to reverse the baby’s heart failure before birth. This allowed the baby to remain safely in utero for a crucial extra month.
We have far too many easily accessible girl toys laying around our house. The other day Caleb came running (he sort of runs) into the kitchen saying loudly, "Dada, dada." I turned around to my dismay seeing him, again, playing with a pink princess tea pot and two baby blue spoons. As any good father would do, I confiscated the teapot, gently rebuked him for playing with these type of toys, and went out to the car where just hours earlier my sensitive wife had stocked up some thirty G.I. Joe's she purchased at a garage sale.
Sara, Caleb's physical therapist who has been seeing Caleb since he was born, recently decided to graduate Caleb out of physical therapy! This is great news. It means that he is demonstrating age appropriate physical skills. 
At 6:00am Tuesday morning, Caleb will be at Miami Children's Hospital one more time. This time, it will be dental work that will take place. Caleb has a tooth that is decaying, a cavity, and hypoplasia (teeth that did not develop properly, evidently he has little holes in his teeth).
So Friday night at church, Caleb stumbled and knocked his head on the tile floor. So we had family night at Miami Children's Hospital. We've never seen that place so crowded. Thanks to Caleb's heart condition, we always have short waits at the ER. They take us in right away. That was good.
Caleb is 18 months and seems to be doing well. He's on a regular diet now, eating solid foods and drinking regular milk. He was weaned off one of his reflux medicines; he's getting 7 therapy sessions a week instead of 9; he walks all over the place with his push toy and is starting to stand and take a few steps on his own. He's communicating a bit better and he loves to play, climb and explore everything. 
