Full Name: Isaac Carlin
Gestational Age at Birth: 25 weeks
Hospital: St. Joseph’s Women’s Hospital
Favorite Book or Toy: Jeremy the Turtle
Sandra Carlin’s son, Isaac, is nothing short of a miracle baby. For others, he’s a living testimony of faith. Sandra was admitted to the hospital on bed rest after her 20th and 24th-week check-ups. She had been identified as a high risk pregnancy and forewarned of a potential weak cervix. At her 21st week check-up, she was in surgery for an emergency cerclage; by week 24 her cervix started to shorten again. By week 25 she was having contractions and delivered her firstborn at 4:49 pm on October 9th. Isaac Noah Carlin was born at 2lbs 1oz and 13.5”. The biggest test of faith happened over the next 104 days in the NICU and beyond.
On Isaac’s third day of life, the Carlin’s were told he had an inter-ventricular hemorrhage (IVH), also known as a brain bleed. A brain bleed can occur on one or both sides of the brain, from grade 1 to 4 (4 being the worst). Isaac had a grade 3 bilateral bleed and there was nothing to stop it. They were informed of all the lifelong complications he would have, including death, and given little hope of normalcy. On this day they prayed for his life and promised, no matter the outcome, they would accept Isaac for who he is. A few days later he fought his first infection. Then a few days after that, the Carlins were preparing for a PDA litigation, a surgery to repair the artery that flows from the heart to the lungs. This wasn’t even the peak of the emotional rollercoaster for their family.
As they prepared emotionally for the PDA ligation, they were told the IVH caused hydrocephalus (water in the brain). Isaac now needed brain surgery for a reservoir shunt to tap out the excess cerebrospinal fluid. Weeks went by and they had begun planning for the PDA ligation again. At this time, they received a call – the shunt was infected. It had to be surgically removed as soon as possible and replaced with an external drainage. Isaac was now fighting his second infection. The next day, his brain was combatting seizures.
The doctor explained that Isaac would likely have further lifelong complications, but the Carlins stayed true to their promise and their faith. No matter the outcome, they would accept Isaac. Weeks went by, the seizures stopped, his PDA was smaller and little fluid was draining. They received news that he may not need a PDA ligation nor a shunt. A few more days went by and the external drainage was removed. However, a few days later the PDA enlarged again, and the hydrocephalus was back. Isaac needed surgery. He received surgery for the shunt, but the catheterization never happened.
Isaac learned to bottle and breastfeed, and started room air trials, but showed he needed a little oxygen support. On Christmas, he finished his first bottle and a few days later, all of them. The Carlin’s were told Isaac would be going coming home an entire week before his due date! As they prepared for his arrival, they waited for the call to be discharged. Instead, a head ultrasound and MRI confirmed the growth of a cyst causing a midline shift of his brain. Isaac would undergo another surgery for a shunt revision and to add a catheter.
On January 21st, 104 days later and the day before his due date, Isaac arrived home. But the emotional rollercoaster did not end in the NICU. On March 1st, a head ultrasound was performed due to a bump on his head. A follow-up MRI was done on March 2nd and confirmed a larger cyst and a dramatic midline shift of his brain. Another catheter was added to Isaac’s shunt and in less than 24-hours post-op, Isaac was ready to come home.
Today, Isaac’s brain is midline again! The PDA closed, and the heart murmur previously found disappeared. The ROP (an eye disorder that can lead to vision loss) went away. Isaac has been off oxygen support since April 1st. An EEG found no seizure activity or risk; he’s no longer on anti-seizure medication. His primary care had found groin and umbilical hernias. The pediatric surgeon waited until Isaac was bigger to perform the surgery, but at his follow-up, no hernias were found, and a scrotum ultrasound confirmed these findings, dodging surgery again. Lastly, his therapist said Isaac is on target for his actual age cognitively and for his adjusted age on gross motor skills. Sandra said, “God has truly given us the best possible outcome and I’m glad our faith never strayed! Isaac is a living testimony of faith and miracles. I gave birth to my hero!”
Sandra also said, “Because of HRH’s support, I didn’t feel alone. The Bed Rest Basket I received was very heartwarming and allowed me to focus solely on my pregnancy while on bed rest. The milestone cards in the NICU Napsack gave me peace of mind that what Isaac was experiencing was part of being a preemie, and it gave me hope for the next step in Isaac’s journey. I looked forward to completing each and every milestone card. I’m also a big advocate on reading to a child early, so the book that was included was very much appreciated and the start of Isaac’s book collection. Lastly, the NICU dinners allowed us to connect with other families in similar situations and support each other by our lived experiences or by newfound perspectives to current situations.”
While Issac was in the NICU, the Carlin’s attended HRH’s 2017 Tot Trot. The day before Isaac had his bout of seizures. But that morning, right before the walk, the Carlin’s received a call from the NICU informing them Isaac didn’t have another episode of seizures and was doing much better. They almost didn’t make it to the walk but decided to meet up with their family and friends who had come to support their family. Sandra said, ” We were so happy that we made it. Seeing each child’s progress gave me so much hope in the uncertain situation we were then facing with Isaac. We’re so grateful for HRH’s support that we want to support the cause in return.”
You can support families like the Carlins by donating to Team Isaac Strong.