From Life Threatening Conditions to a Remarkable Recovery
After a painful and sleep deprived weekend and a long battle with headaches, backaches, and swelling, mom-to-be Ashley developed an intense migraine in January 2016, which together with multiple high blood pressure readings, created a life-threatening situation for both Ashley and their unborn child Graham.
Journey to Mount Sinai’s Neonatal Intensive Care (NICU)
At the advice of her doctor and their family, Ashley and Kevin rushed to the Mount Sinai Labor and Delivery Unit in Manhattan. Within an hour, Ashley was diagnosed with two very serious conditions, pre-eclampsia and HELLP syndrome, and was told she would be delivering Graham under general anesthesia almost immediately. It was a few hours later in the NICU where they met Graham’s primary doctor, pediatric neonatologist Scarlett McKinsey, MD.
On Tuesday, January 19, 2016 at 4:13AM, their beautiful son Graham was born 14 weeks early, weighing 1lb. 14oz. and measuring 34cm long (14 inches). He was immediately rushed into the hands of Mount Sinai NICU’s incredible doctors and nurses to receive around the clock care for what would turn out to be the next 100 days.
“I met Graham when he was about three hours old. Based on his extreme prematurity and size, I anticipated that he would be in the NICU with us for about 3-4 months. During that time, our goal as neonatologists and neonatal nurses is essentially to try and emulate the placenta as best we can. It became our job to support Graham’s growth and development by helping him to breath, nourishing him so he could grow, and supporting his parents so they could help us care for him,” explains Dr. McKinsey.
Graham experienced it all, or at least that’s what it felt like to Kevin and Ashley. He was immediately placed on a high frequency jet ventilator pumping 400 breaths per minute. He was diagnosed with jaundice and was placed under the blue lights. He had a grade 1 intraventricular brain hemorrhage and (PDA). He also had three blood transfusions, hypothyroidism, hyperinsulinism, TPN cholestasis, kidney stones, and a hernia. Graham was intubated for over a month, was on cpap ventilator for another month and a half, and then high flow cpap for another several weeks before he was on room air.
“Because of his extreme prematurity, Graham developed Respiratory Distress Syndrome which is caused because his lungs were so immature and still in an active stage of development, Patent Ductus Arteriosus (PDA) which is a condition where there is abnormal blood flow through a blood vessel that connects two of the major arteries and a surgical procedure was done to close that blood vessel, and IVH, which is bleeding inside the brain. These are common issues in babies his size and gestational age. He threw us for a loop late in his NICU stay when he developed hyperinsulinism, an above normal level of insulin in the blood, which is something we don’t see as commonly,” explains Dr. McKinsey.
The NICU Experience
Kevin and Ashley didn't know what to expect as Graham was their first child but their experience in the NICU would change their lives. They bonded with the doctors and nurses, and so many other families and babies and shared in their ups and downs and sometimes heartache. They got used to so many uncomfortable phobias like the sound of beeping noises. They didn't expect that they would one day call those doctors, nurses, and strangers, family. Because that's what they are now, a NICU family. Brought together in a way none of them expected, or even wanted. A family that watched their babies grow together, struggle and overcome together. And that is what made the NICU experience so special to them.
The team of doctors and nurses at Mount Sinai, together with their social worker Jill Winston, MSW, were absolutely incredible. They made sure Kevin and Ashley were involved in every aspect of Graham’s treatment, and explained everything in great detail. Most importantly, they celebrated every victory as if it were their own child and gave Kevin and Ashley words of encouragement when things didn’t go as planned.
Their primary nurse, Jillian Delano, RN, was their rock through the whole experience. She was everything they dreamed of in a primary NICU nurse and wore many hats. She communicated every step and explained important information, helped relieve their day to day stress, kept them calm and provided peace of mind, and most importantly was so kind and caring and was Graham’s biggest fan and advocate lover. Kevin and Ashley couldn’t have survived the journey without her.
“When I first met Kevin, shortly after meeting and beginning my friendship with little Graham, he was one of the strongest fathers I have met yet. His son was on so many machines and medications and his wife was not well, dealing with blood pressure issues and a possible infection, yet he was still able to keep everything together. Through snowstorms, visiting family members and two of his closest people in the hospital, he was a rock and continued to be that throughout their NICU stay. I decided to take Graham on as my primary patient in those first few days, seeing how much this family was already coping with. This is a service we offer to parents so that the baby has consistency in care and so we really get to know the baby and family so we can be the best possible advocate for them. I participated in rounds and worked with the medical team to decide his treatment plan. As a result, I provided peace of mind for the family to help them cope and built a close relationship with them. It's wonderful to watch the baby grow, improve and jump over the NICU complications that can arise. I’m very proud of how our NICU team communicated throughout Graham's stay and advocated for him. We helped the parents balance knowing the ins and outs of his care, but not getting overwhelmed by too much either. Graham is a great example of how slow and steady wins the race. His baby steps got him smoothly through his preemie days. His parents have been amazing and are raising a beautiful, happy and baby boy. I am very lucky to have had this family as part of my career journey at Mount Sinai and I’m thankful that I get to visit with him and see pictures of him as he continues to thrive,” nurse Jillian explains.
There were many others who helped Graham throughout his 100 day journey including Amy Homnick, RN, Catherine Reilly, RN, and Elizabeth Trudell, RN. Then there were the doctors that made that made this miracle baby possible. In the face of uncertainty, difficult decisions, and sometimes difficult parents (as Kevin and Ashley say they were at times), the entire medical staff had an unwavering dedication to Graham's well being. Graham’s primary doctor, pediatric neonatologist Scarlett McKinsey, MD, set the parents at ease from the first day with her extensive medical expertise, calming personality, and patience while answering what Kevin described as over a thousand questions. In Graham’s 100 day journey in the NICU, other Mount Sinai pediatric neonatologists such as Jing Lin, MD and others have spent countless hours in the NICU to take care of him and other sick babies. The full list of doctors, residents, fellows, etc. is too long to write, but they all played an integral part in Graham’s journey and they can't say thank you enough.
Looking Back: One Year Later
Graham is 15-months-old now and we have one beautiful, happy, healthy, huge, inquisitive, tireless, miracle baby thanks to the Neonatal Intensive Care team and the entire staff at Kravis Children’s Hospital at Mount Sinai. Graham continues to inspire those around him with his bright blue eyes, kind-hearted smile, bashful personality, and incredible strength. He has met or exceeded all of his developmental milestones, and has lived up to the hashtag that was created for him the day he was born: #BGS (Baby Graham Strong).
Graham spent 100 days in the Mount Sinai NICU, and Kevin and Ashley were there for every single one of them. They’ve developed lasting friendships with many other NICU families, doctors, and nurses, all of which have changed their lives for the better. Through their story, Kevin and Ashley wish to spread awareness about the complications of pregnancy, specifically pre-eclampsia and HELLP syndrome, and to help families cope with the difficulties, stress, and joy that comes with having a NICU baby.