THOMAS'S STORY

 A Miracle. That is what Thomas is. He is proof that God works miracles every day.

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     At my 20-week anatomy ultrasound, we learned that we were having a boy. It was such an amazing moment. We already had a girl, who was almost 2 at the time, and now a boy. How perfect! Then the hammer came down. The doctor called us into her office with a grim look and informed us that our son has an occipital encephalocele. Honestly, in that moment, we didn't understand a word she said other than "severe," " high mortality rate," and "not a lot is known about it". Between a wiggly toddler and our hearts being ripped out of our chests, we could barely remember to breathe. We were confused and heartbroken. After Googling what the doctor had described (because we couldn't remember the name), we became even more traumatized.   We had to call back the next day to get the actual name of the diagnosis. Then, internet search after internet search led to more and more despair. There was no recent research to give us any information. What we could find just explained the condition, and the general prognosis was that the baby would probably not survive or have any quality of life. Then, we went to a maternal fetal medicine group, hoping for more answers. Unfortunately, we left even more frustrated because they had just as much information as we did. That was the problem. There was no information.  No answers. No help. No resources. We did not know where to start, who to ask, or what to do. Hopelessness was the only thing we found.  But, we continued on.

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     Upon endless research, I came across a few success stories and a Facebook support group. This helped us to keep going. Finally, after trying to figure out where else we could go for Thomas to get the best care, God sent us a message through a father and son we met at a hotel pool in Philadelphia. The son, whose name was also Thomas, had some disabilities but had had much success through the care of his doctors at the Children's Hospital Of Philadelphia (CHOP). His father sang their praises. To be honest, CHOP was not even on our radar, but my gut, or the Holy Spirit, told me to pay attention and call CHOP as soon as we got home.

     So we made arrangements to visit CHOP. While we were there, the doctors conducted several tests, including a fetal MRI and several ultrasounds. After the results were in, we met with the doctors, all the while hoping they would tell us not to worry and that our son would be fine. They were the best of the best, after all. They had to have a solution.  Unfortunately, this was not the case.  They predicted Thomas's condition to be severe, with little chance of survival and less of a chance for any quality of life.  Simply put, his brain was abnormally formed and simple tasks, such as breathing on his own, would be almost impossible for him.  We struggled to make sense of the grim outlook and braced ourselves for the worst.  We felt numb, as if a cold vapor had seeped through our bodies and the wind was knocked out of us.  Before we left the room, the neurosurgeon, Dr. Gregory Heuer, told us that they didn't want us to lose hope and that there was always a chance things could go differently. He reiterated that he wanted to be wrong about the outlook and that the team at CHOP would do whatever they could for Thomas. That one little word - hope - became our mission for Thomas, whatever the outcome. Through prayer and support from our family and friends, we gained some graces to help keep us going over the next few months.  If I wrote all the details, this would be multiple pages long, but it was key in keeping our family from crumbling.  We got to a point where we gave Thomas completely over to God and surrendered our will.

     The time came to have Thomas, and the prognosis remained grim.  We had a cesarean section planned, as Thomas's condition prevented me from delivering naturally.  I arrived in delivery, and doctors prepared me for the surgery.  I prayed.  With my husband at my side, we braced ourselves for Thomas's entrance into this world, however long it would be.  "He's out," proclaimed his doctor, "...And he is not happy about it."  Thomas came out kicking and screaming. He was a beautiful pink baby boy! He had an APGAR score of 7 or 8 and was breathing on his own, something he wasn't expected to do.  After his birth, some doctors felt Thomas might still pass. They noted that his brain was underdeveloped and not formed properly.  However, the doctors eventually decided that Thomas was healthy enough for surgery, and he underwent his first surgery 10 days after he was born. 4 more surgeries followed in the next few months.  Dr. Heuer, Dr. Taylor and the medical team/staff were amazing.

     After almost two months in the NICU / ICU, 5 surgeries, and ceaseless prayer, Thomas has not only exceeded expectations, but thrived.  Needless to say, the journey hasn't been easy, but it has all been worth it. Every day since, he has been amazing the doctors. He eats like a champ. He loves to laugh and smile. He plays with his sister, kicking and grabbing for her.  He doesn't let much ruffle his feathers, but will fight to the death when something does.  He's our warrior. He has some delays with motor skills and vision, but he is progressing every day. Each day he gains a new skill that he didn't have before. All the therapists and doctors believe he will hit his milestones, just at his own pace. Upon his one-year check up, his neurologist, Dr. Heuer, noted that the CAT SCAN of Thomas's brain "looks normal," with some malformations to the thalamus.  He amazes us each day and reminds us how merciful and loving God is. Through the resources we gained along the way, people God put in our path, and the wonderful team at CHOP, our son, Thomas, has had an amazing reversal.  Thomas is designed by God for his purposes, and we have been blessed to have been given such a gift!