Baby who had life-saving fetal surgery celebrates first birthday

First-time parents, Tiffany and Stephanie, couldn’t imagine what lay ahead when they learned about their unborn son’s rare medical condition.

The couple had dreamed about growing their family, and the pregnancy had been smooth, until their routine anatomy ultrasound. They were eager to catch a glimpse of their growing baby, but within minutes of the scan, Tiffany recalls that something felt wrong.

“The ultrasound technician seemed concerned,” said Tiffany. Her gut feeling was confirmed when a radiologist shared the diagnosis that their baby had a rare condition: a congenital diaphragmatic hernia (CDH) . This occurs when there is a hole in the diaphragm which allows the abdominal organs – including the stomach, bowel or liver – to move up into the chest. If the hole in the diaphragm is large enough, these organs can compress the lungs, preventing them from growing properly.

Based on the ultrasound scans, a large proportion of their baby’s diaphragm appeared to be missing and they were told that he was unlikely to survive.

“We couldn’t believe what we were hearing,” said Stephanie. “It felt like everything was moving in slow motion.”

Determined not to give up hope, they sought a second opinion. The couple was referred to the OFC in Toronto, where they met with lead fetal medicine specialist, Dr. Greg Ryan.

A second opinion and a beacon of hope

Based at Mount Sinai Hospital, and in partnership with The Hospital for Sick Children (SickKids), the OFC is internationally recognized and is the first centre of its kind in Canada. It specializes in managing high-risk pregnancies and offers groundbreaking fetal therapies.

After an initial virtual consultation, Tiffany and Stephanie put their life in Newfoundland on pause and travelled to Toronto for what would become a seven-month journey. Dr. Ryan said that their baby‘s case was severe, but that they were eligible for a procedure called fetoscopic endotracheal occlusion (FETO).

The procedure is performed in only a handful of centres internationally, on babies with severe CDH while they are still in the womb – usually between 28-30 weeks of pregnancy. The OFC is the only centre in Canada to offer treatment in-utero for CDH, and since 2010 has performed more than 50 such procedures.

During the procedure, using a specially made fetal endoscope, a tiny balloon is placed in the fetal windpipe to block the trachea. This promotes lung growth by preventing fluid from leaving the lungs. To give time for a baby’s lungs to grow, the balloon must remain in place for several weeks before it is removed. 

“Our inter-professional teams specialize in supporting CDH fetuses and babies with a wide range of severity from across Canada,” said Dr. Ryan. “We are proud to set the benchmark for research, collaboration and continued innovation in complex fetal surgery.” 

After consulting with their OFC care team to understand the procedure and the expected outcomes, Tiffany and Stephanie believed it would give their unborn baby the best possible chance of survival. 

“Finding out that your child needs surgery is difficult for parents,” said Dr. Joshua Ramjist, staff surgeon in the Division of Paediatric General and Thoracic Surgery at SickKids. “While we can’t take away the surgery, we can at least soften the fears and make the experience gentler for families through frequent consultations.”

Promising results

Follow-up ultrasound scans over the weeks following the FETO procedure showed promising results. Baby Rowan’s lung growth was showing definite improvement. 

Dr. Ryan was on-call when Tiffany went into labour, which was a comfort during the final stage of her pregnancy. Rowan was intubated immediately after birth and was stabilized by the team of respiratory therapists and neonatologists at Mount Sinai. 

Collaboration is woven through every step of the specialized care that patients receive at the OFC. 

After his condition was stabilized, Rowan was transferred to SickKids, where he stayed for 127 days before he was discharged home.

The simple joys of parenthood

Rowan recently celebrated his first birthday. One year later, his parents are basking in all the precious milestones and everyday parenting moments that represent how far they have come.

Although he still faces certain challenges, “every day he grows stronger,” says Tiffany. 

 

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These days, Rowan enjoys swimming, and his social calendar is quickly filling up with play dates and birthday parties – something his parents never thought would be possible before. 

“We are so thankful to our entire care team”, said Stephanie. “If we hadn’t gone to the OFC we wouldn’t have this sweet, happy little boy.”