Quinn’s Story - Congenital Diaphragmatic Hernia (CDH)
When Quinshae was 19 weeks pregnant, her OB-GYN detected a fetal abnormality and suspected Congenital Diaphragmatic Hernia (CDH), a condition in which the diaphragm fails to develop properly. A thin sheet of muscle, the diaphragm plays an essential role in lung function and creates a separation between the abdomen and the chest. CDH is classified from mild to severe, and prenatal exams suggested that Quinn would be born with the most severe and highest-risk form of CDH.
Quinshae had never heard of CDH and immediately started doing her research. She even traveled to Northern California to learn about a clinical trial to repair the defect in utero. Although Quinshae and Keith wanted to do everything possible for their baby, they felt the risk of the experimental procedure outweighed the risk of carrying Quinn to term. Quinshae returned home and leaned on her faith—and her determination.
“I worked until 38 weeks,” Quinshae says. “That’s how I stay focused. Even though I knew something was going on, I felt that for me, for my baby, I needed to carry on as normally as possible.”
Quinshae, 27, has perfected her ability to stay focused and positive through more than her share of losses.
“I’m an open book, so I’ll start from the beginning,” she explains. “This is my third pregnancy, and Quinn is the only one that’s made it.”
Her first pregnancy ended at 21 weeks, and her second at 12. Distraught but determined, she and Keith underwent genetic testing before trying to conceive a third time.
“Everything came back fine,” Keith recalls. “They said there was no chance of something like that happening again.”
When they found out at 19 weeks gestation that Quinn would be born with CDH, Quinshae decided not to let the diagnosis overtake her excitement and joy about having a child.
“I prayed for Quinn,” she says, “and I felt like this is the baby that’s supposed to make it to the end.”
Coming ‘home’ to CHLA
Quinn arrived four days before her due date, just down the street from CHLA’s Sunset Campus.
“The doctors said if they couldn’t get her to where she needed to be, we’ll send her to CHLA,” Quinshae recalls. “I was confident that Children’s Hospital could take it to the next level if she needed it.”
Within hours of her birth, the need was clear. Quinn was quickly transferred to the Steven & Alexandra Cohen Foundation Newborn and Infant Critical Care Unit (NICCU) at CHLA and placed in the care of a team of specialists with extensive experience in CDH.
“When an outside hospital contacts us with an emergent referral,” says Rachel Chapman, MD, Medical Director of the NICCU and Associate Chief, Division of Neonatology, “our goal is to be on our way to the baby within 30 minutes of the call.”
Dr. Chapman, along with Attending Physician Narayan Iyer, MD, has been overseeing Quinn’s care since she arrived at CHLA.
Because her lungs were constricted by her liver and other organs pushing into her chest, the immediate concern with Quinn was pulmonary hypertension or high blood pressure in the lungs. To relieve the high blood pressure and give her fragile lungs time to develop, she spent two weeks on Extracorporeal Membrane Oxygenation (ECMO) therapy.
“That big machine, it’s overwhelming,” recalls Quinshae. “You could hardly see her. She was hooked up to so much stuff. So the beginning was really rough, even though we knew it would be a miracle if Quinn didn’t need [ECMO].” Because being on ECMO carries risks, including neurodevelopmental disability and bleeding, there is a limited number of days babies can be on it—and Quinn reached the limit.
Pediatric Surgeon Juan Carlos Pelayo, MD, FACS, FAAP, performed Quinn’s repair surgery just before she came off ECMO, carefully placing a piece of mesh in Quinn’s abdomen to mimic the missing diaphragm. He left the wound open to allow her swelling to go down for several weeks before performing a second surgery to close the repair. Manvi Bansal, MD, Attending Physician in the Division of Pulmonology and Sleep Medicine, has also cared for Quinn through the use of ventilators and, recently, a tracheostomy to assist with her breathing.
Through major holidays and several changes of season, Quinshae has been by her daughter’s side. While it’s not always been easy, she is grateful for the many ways CHLA takes care of everyone in the family.
“There are so many different activities. I am in a scrapbooking club, which is awesome. I have two scrapbooks: one has just her cute little pictures, and the other one I’m starting from the beginning. Those pictures aren’t so nice, but to see her progress — wow. She has made it so far.”
Quinshae and Keith also appreciate that when they can’t be at the hospital, Quinn is surrounded by love.
“We didn’t get to hold her until she was two months old. But ever since, if she’s fussing, everyone knows to hold her, which will calm her down. She doesn’t even care who’s holding her — Cuddlers [volunteers in the NICU] are amazing!”
Quinshae and Keith say they’ve grown incredibly close to Quinn’s primary nurse, Sarah Daggett, RN, who attends the team and family meetings and always ensures Quinn gets the care she needs. As Dr. Chapman says, “everyone on the team thought Sarah was Quinn’s primary nurse even before she was officially assigned as her primary.”
“Knowing that she is in great hands, even when we are away, is key,” Keith says.
Quinshae agrees. “I feel like Sarah is her second mom.”
For the past few months, Quinshae and Keith have been learning how to care for Quinn’s ongoing medical needs when they leave CHLA. According to Dr. Chapman, it is common for babies with CDH who need ECMO to develop chronic lung disease, and Quinn is one of those cases.
Quinn will go home with the tracheostomy, and she will need a home ventilator for as long as a year or two. During that time, the family will be part of the Home Ventilator Program led by Dr. Bansal. She will also participate in the Newborn Follow-up Program and Dr. Pelayo will follow her throughout her childhood if she needs another surgery later.
At 7 months old, Quinn is a physically strong, feisty little girl who has earned the nickname Boss Baby.
“As Dr. Chapman says, ‘Everything is on Quinn’s timing,’” Quinshae explains. “One time when they tried to wean her off [the ventilator], Quinn was like, ‘Oh, I’m not ready!’ Later, she looked at them like, ‘alright, you can test me now!’ At that time, the doctors didn’t think she’d make it off the vent for more than two hours, and she ended up lasting much longer.
“It’s been a long journey,” Quinshae adds, “but I can honestly say Quinn beat the odds. She really is a Boss Baby!”
Through all the ups and downs, Quinshae maintains her sense of optimism and gratitude. She is determined to inspire others.
“This is not a good thing to be going through, but CHLA has been an amazing experience. And I feel like Quinn is the right baby to inspire others. Even though she’s been on ECMO, she’s had surgery and been really sick, she’s doing great. It’s about the love, and just being there. It plays a big part.”
Keith agrees. “We are sharing our experience for the other parents who might be going through this now or will in the future.”
Quinshae offers this advice to other NICU families: “Keep your head up. Take this on as something that is making you and your baby stronger in the end. Right now, your babies are caterpillars, but they will get their wings and become butterflies. When Quinn has her butterfly moment, and we go home, it will be amazing! I’m looking forward to that.”