Baby Donny thriving after 7-month medical ordeal

When Audrey Sibailly and Gui N’Guilly brought their firstborn child, Donny, home to Canton in September, they were as excited an any new parents would be. Donny is not a newborn, however. The couple was thrilled that Donny, who will celebrate his first birthday on February 13, was joining them at home after spending more than seven months in three different hospitals. Donny was born with trisomy 21 (Down syndrome) and was diagnosed with aspiration pneumonia in June.

Audrey Sibailly and Gui N’Guilly with their son Donny

Audrey had gone through testing in the early stages of her pregnancy with Donny. She and Gui knew that they were expecting a baby with Down syndrome, but were undaunted by any challenges that they might face.

“We are believers,” Audrey said. “We believe in God. We know that a child is a reward from God. We told the doctor that the baby was a blessing. My husband was always the strong one.”

Gui’s perspective was one of deep faith and down-to-earth practicality. As Audrey’s pregnancy progressed and tests showed that Donny may have other health concerns, Gui remained calm, putting things into perspective. “If you treat him like a sick child, then you will see a sick child,” he said.

Donny was born early, at Beth Israel Deaconess Medical Center, and physicians immediately focused on his difficulties with breathing. “His airways weren’t as developed as they could be,” Audrey explained.

She was discharged five days after Donny’s birth, but the baby remained in the hospital for about six weeks. When Donny went home, he was on oxygen. His doctors had scheduled a check-up appointment for 10 days following his discharge, but his parents could see that he had aspiration problems and wasn’t eating the way he should. His oxygen levels were also low.

Audrey and Gui took him to the doctor ahead of the scheduled appointment. The doctor immediately sent them to South Shore Hospital, where it was determined that Donny had fluid in his lungs. The baby was transferred by ambulance to Boston Children’s Hospital, where he spent the next three months of his life. Doctors and nurses worked hard to make sure that he was healthy enough to go home again, and although he came close to being discharged on a couple of occasions, something would happen that prevented them from giving the final approval to his discharge.

Donny’s doctor finally spoke to Audrey about a choice for the baby’s future care. The doctor told her that they had tried everything to help ease his breathing without success and then suggested two options. One was to send Donny to Franciscan Children’s Hospital in Brighton for about two years to be cared for as his airways developed. The other was to perform a tracheotomy at Children’s, a procedure during which doctors would make an incision in Donny’s windpipe to help with the breathing difficulties, and then send him to Franciscan for a shorter time. The second choice involved teaching Audrey and Gui how to care for the baby at home with his trach tube.

The couple decided to go with the second option. Ultimately, the operation was more involved. Doctors performed the tracheotomy, inserted a gastrostomy tube (G-tube) into his stomach for additional feeding, and repaired a hernia. The procedures were successful and when Donny was ready, he was moved to Franciscan Children’s Hospital, where they met nurse practitioner Kassy Thompson.

“We love Kassy,” Gui said. “Through this whole thing, she made sure we were ready. She kept us moving. She has a plan. She tells you the plan so you actually see it. We trusted her from the start.”

Donny N’Guilly during his stay at Franciscan Children’s Hospital

Their time at Franciscan involved learning how to care for their son in order to do it on their own with the baby at home. They learned how to give him medicine through the G-tube, to perform CPR on him, to look for signs of an infection at the site of the tracheotomy, to change the trach’s dressing daily, to give the baby a shower, to put him in his crib to sleep, and how to make sure he moved around safely as he started to crawl.

Donny arrived home near the end of September after three months at Franciscan Children’s Hospital and is thriving. He weighs 21 pounds and is clearly going to be tall, perhaps getting his height from his father’s family. He has a good appetite and enjoys puréed vegetables, milk, rice or wheat cereals, water, and yogurt. A new favorite is strawberry-flavored yogurt. His parents say that he talks a lot, yells, screams, and generally makes a lot of noise. He is ready to move around and his doctors are happy with his progress. His trach will be removed when it’s clear he can breathe without it.

Although things are moving forward in a positive direction for the family, they have founds that there are unexpected expenses around Donny’s illness. When the baby was born, Audrey took maternity leave from her job as an investment analyst at a bank. Gui was working as a medical transportation driver, but taking time off to go to the hospital and visit Donny. Eventually he lost his job for missing work, but was able to find the same job with another company. Their daily drive into Boston found Audrey and Gui spending more on gasoline than they had anticipated and also paying for parking until they could get passes.

Audrey returned to work in May. “The financial aspect could be stressful for any parent,” she said.

The family is fortunate because they have relatives close by. Donny’s grandmothers know how to suction mucus or fluid from him and how to bathe him without disturbing the trach. Aunts and uncles also help out. They are all focused on Donny’s next steps. “We’re so excited about his development,” Audrey said. “We’re trying to hit the different marks now.”

Audrey and Gui are very grateful for the support they have received. “We really want to thank the hospital staff, the doctors for explaining things, for being very understanding,” Audrey said. “The nurses tell you, ‘Have a plan. Don’t be scared to schedule a meeting.’ Use Google, read. You have to inform yourself. Don’t build a shell around yourself. People have good hearts. Just believe in people.”

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Posted by Mary Ann Price on Nov 15 2019. Filed under Features. Both comments and pings are currently closed.