Nothing prepares you for having children, especially when your newborn is whisked away to the Neonatal Intensive Care Unit (NICU). Suddenly, fear and uncertainty overshadow what would normally be a joyous time.
The families of Maverick Saatchi and Jacob Oquena are intimate with NICU life. The boys are stable now, but went through a lot to get where they are. They were born prematurely in 2014 and endured multiple surgeries and extended stays at Cohen Children’s Medical Center.
The families recently returned to Cohen Children’s to celebrate the 35th anniversary of the hospital’s NICU and to share their stories.
Living with tracheoesophageal fistula
Maverick was born at 31 weeks with tracheoesophageal fistula (his esophagus and trachea didn’t connect to his stomach).
Maverick was 24 hours old when he had his first surgery — the first of 10 surgeries he’s had. After nine weeks in the NICU, he was discharged to his Merrick home on April 29, 2014.
His relationship with Cohen Children’s has continued. Maverick has required 15 hospitalizations to address effects of his birth condition. For example, he suffered from staphylococcal scalded skin syndrome (SSSS) in early 2017. SSSS causes red blistering that makes the skin look burned or scalded.
“He looked like he was burned from the tip of his head to his toes,” Ms. Saatchi said. “He came to Cohen Children’s through the ED [Emergency Department] and they knew exactly what it was. We stayed 10 days. He’s old enough to know what’s going on. Every time we were here, the doctors and nurses always made him No. 1.
“This hospital is our home. We are lucky that it’s here. Through all of this, Maverick has a smile on his face when he walks through the doors.”
The preschooler has had hernia operations and two esophageal dilations (stretching of his esophagus), including one about a month before the NICU anniversary party. Feeding is difficult right now, and Maverick regularly receives occupational, physical and speech therapy.
Yet the Saatchi family radiates optimism — nick-naming his surgery scars “shark bites,” for example. His esophagus should lengthen as he grows, and doctors say the 4-year-old’s outlook is very promising.
Maverick is inspired to become a doctor when he grows up.
“It’s taken us a long time to get to a happy and healthy boy,” said Ms. Saatchi. “Being here, it became normal. They didn’t make us feel out of place at all.
“Having a child born without an esophagus — and other stuff you don’t expect being a first-time mom — they never said ‘We don’t see this.’ Instead, they reassured us that everything is going to be OK.”
Progress with severe chronic lung disease
Jacob Oquendo’s first 11 months were an emotional roller coaster for his parents, Tiffany Collado and John Oquendo. He was ready for a discharge from Cohen Children’s to his Selden home many times, but a new issue would extend his stay.
Born at 30 weeks and weighing 3 lbs., 4 oz., Jacob was transferred to Cohen Children’s at one month old. Now 4 years old, he lives with severe chronic lung disease. He has had six surgeries, five blood transfusions, four rounds of high-dose steroids, a tracheostomy with ventilator support and a surgically placed feeding tube (G-tube).
Ms. Collado never imagined her newborn’s struggles while she was pregnant. She said her pregnancy was normal until her water suddenly broke.
“I got rushed to the hospital,” she said. “When he first came out, he was completely blue. They took him away and I didn’t see him for 72 hours.
“They didn’t think he was going to make it to the next morning and they told me to get ready and sign the releases for DNR [do not resuscitate].”
Ms. Collado declined to sign the forms, believing Jacob would rebound. Steroid injections — a common treatment for premature babies — helped his lung function and the turnaround began once he arrived at Cohen Children’s.
Jacob’s first year was a blur for his family. Ms. Collado never left Jacob’s bedside except to shower at the Ronald McDonald House of Long Island nearby. Jacob was sick, but having care from a team of pediatric specialists was “a different experience,” Ms. Collado said.
Still, healing came in fits and starts, so Jacob’s hospital discharge was elusive for a long time. He seemed ready on several occasions, but doctors found high carbon dioxide levels in Jacob’s blood, which can cause acidosis (excessive acids in the body and tissue). Jacob was intubated to open his airways and help him breathe at four months old and extubated two months later, only to get sick and intubated again within weeks. Additional challenges included a double hernia, plus insertion of an abdominal feeding tube so Jacob could receive the nutrition he needed.
In one moment where discharge looked promising, Jacob was rehabilitating and preparing to go home. But his big day was again delayed when the Cohen Children’s team determined he was suffering from hydrocephalus — water surrounding the brain.
“He had a brain bleed,” Ms. Collado said. “We were freaked out.”
A pediatric neurosurgeon immediately inserted a shunt to drain the fluid that was putting pressure on Jacob’s brain.
“Everything was good and he was getting better,” Ms. Collado said. “Right before we were leaving, he got meningitis.”
More high carbon dioxide levels also held him back yet again.
“We were literally here for 12 months,” Ms. Collado said. “We left right after Christmas — December 29 in 2014. When I say the story, I don’t remember living it.”
Jacob still receives nutrition from a G tube and uses a machine with nose tubes to deliver oxygen at night. A full-time nurse goes with him to school. Ms. Collado said the hope is Jacob will only have to deal with asthma by the age of 7.
Ms. Collado and her family are happy that Jacob is starting to thrive. Cohen Children’s team of specialists made this progress possible.
“Our experience here was amazing,” she said. “Before I came here, I didn’t know anything. We were so scared, but the bedside manner here is incredible. I’ve developed relationships here with everyone.
“This was one of the scariest times of our lives. Every month was a new challenge. There were many hopeless nights that our wonderful family here at Cohen Children’s got us through.”