Jane Matulis was on vacation in Bermuda when at 22 weeks pregnant she developed HELLP syndrome and was rushed to the U.S. for emergency delivery of her son, Cole, at 23 weeks gestation.
“I didn’t want to fall in love with him initially out of fear,” Jane said. “But of course you can’t fight that. I loved that child with my whole heart.”
Read more about Jane and Cole’s journey and how the bright, healthy first grader is doing today.
What were the circumstances surrounding Cole’s birth?
Cole was a healthy little baby in-utero. I had a general feeling of being unwell at around 20 weeks. At 22 weeks I started swelling rapidly then had upper gastric pain. I knew it was HELLP syndrome, a life-threatening pregnancy complication, from reading online. Symptoms include H (hemolysis, which is the breaking down of red blood cells); EL (elevated liver enzymes); and LP (low platelet count).
I was in Bermuda on vacation when I started to fall apart. The Bermuda hospital diagnosed me with HELLP. They quickly put me on magnesium and started a steroid regimen. I was sent by life flight home to Tulsa, Oklahoma within 48 hours of being diagnosed with HELLP. Just two days later and at 23 weeks, my son, Cole, was born via emergency C-section. He weighed just under 1 lb 1 oz and was 11 inches long. He was only given a five percent chance of survival. The fear and sadness of what could happen was overwhelming.
What got you through the tough times?
What sustained me was my faith. I am a follower of Jesus Christ and I made a choice not to listen to the negativity but believe that Cole would be healed by God’s grace. Every time sadness and doubt crept in I’d open my Bible or devotional or pray. It also helped immensely to hear stories of other preemies who survived and thrived!
You had a three-year-old daughter at the time of Cole’s birth. How did you balance a child at home and one in NICU?
My daughter has always been incredibly mature and handled it all like a champ. Only one day she cried that she wanted her baby brother home.
What kinds of things did you do to feel more like a “regular” mom to Cole?
I sang to him and held him every second I could which wasn’t enough between work as a financial advisor and my daughter at home. But I never beat myself up over not being there for either of them. I knew I was doing the best I could do in these circumstances.
How was it relating to friends and family during your NICU stay?
I hid from friends at first. I couldn’t face what felt like embarrassment or failure on my part. Which is completely ridiculous–I know that now. I wanted to be surrounded by my family though. They gave me hope of a better tomorrow.
Was there anything anyone did for you that helped make the NICU stay easier?
The nurses made signs and hats for the holidays and for college sports games. The University of Oklahoma football and Kansas University basketball are our favorite and they knew it. That bought some normalcy. Our friends brought us food almost every night which helped immensely that I didn’t have to think about feeding anyone!
Did having a preemie impact plans to have any additional children?
We did want more kids. I consulted with five of the top doctors and researchers on HELLP syndrome. All of them felt it would be ok to try to carry another baby. My first pregnancy with my daughter was hard with sickness, weight gain and looking back probably preeclampsia at 38 weeks which is when she was born albeit not diagnosed as I went in to hospital in labor. We chose not to pursue another pregnancy and instead we have a nine-month-old daughter via gestational surrogacy and it’s AMAZING.
How was having a preemie different than having a full-term baby?
The emotional pain of watching your child suffer and not being able to help them–no parent should ever have to endure it. In NICU, my son faced a level two brain bleed, patent ductus arteriosus (PDA) surgery to correct a heart problem, retinopathy of prematurity (ROP) surgery on both eyes, double hernia surgery, a perforated bowel and renal failure but today is a healthy, darling, active and intelligent seven-year-old!
What would you tell a mom who has a preemie baby in NICU right now?
Have faith, we serve the ultimate physician. God is in control and it sometimes isn’t the result we want. My prayer was that God would allow me to be Cole’s earthly mom but I knew that ultimately Cole was the Lord’s, not mine. For me, letting go and letting God was never more real and helpful. Be kind to yourself. None of it is your fault. Do what you need to do when you need to do it. The baby is in the best hands!
How is Cole today?
He’s a first grader and a whiz at math. He wears glasses because he’s near sighted. He has some “higher tone” on his left side of his body due to the brain bleed in his right hemisphere but you would never notice that he is stiffer on that side when he runs. We go to physical therapy once a week and work with an occupational therapist once a week just to fine tune his fine motor skills. To me he’s as special as they come. To everyone else he’s just a normal boy who likes to play and watch TV and eat chocolate (a lot of it).
I always say preemie moms deserve a merit badge. What merit badges do you think you have earned?
I don’t feel I deserve a badge because I didn’t do the heavy lifting. I got through Cole’s first year of life truly by God’s grace. I’m an incredibly emotional person who struggles and always has with depression and anxiety and truly once I surrendered and gave control over to God all that anxiety and depression I’d carried for years prior went away. I just believed and loved that child with my whole heart.