John and I were blessed with the news of our first child to be born in May 2005. At our 20 week appointment, our OB saw some abnormalities on ultrasound that he was not sure of the cause. After several referrals to downtown doctors, it was discovered that our baby had Osteogensis Imperfecta. After much research, John and I realized there was a long road ahead. After an amniocentesis, we were heart-broken to find out that our baby had the lethal form of this disease. Again, we searched for the best doctors and tried to gain as much knowledge as possible in the short weeks we had left. Possible fears were that the baby would die in-utero or be delivered still born. Still armed with a wealth of knowledge that we researched for hours on end, we proceeded with the pregnancy and waited for some sign of good news. As time progressed, ultrasounds showed broken bones and lack of growth. Each appointment was filled with fear, but some hope of a positive result. The outlook was not looking good. We returned to Dr. Giannotti and his staff to hopefully find answers too many looming questions. Dr. G referred us to the neonatal doctor, Dr. Rivas, at Memorial Hermann the Woodlands, and we felt at peace listening to our options. We knew that we had found the place to deliver our son. John and I prayed for many hours for peace of mind and guidance. We knew we made the right decision with Memorial Hermann the Woodlands. We felt prepared and assured that everything would work out as it should. It was the ONLY time we felt like we were in the right place and that our baby would be taken care of, whatever that might mean.
On May 5, 2005, I was scheduled for a c-section delivery. John Charles Wolf, IV , or Baby Jack, was born; screaming and kicking his entire way into this chaotic world. Jack was well taken care of the moment he entered this world, and a hallway full of people fell immediately in love with him as John carried him out of the delivery room and showed him off. As the hours passed, there were scary moments and joyous moments. I remember one scary instance in particular where Dr. Rivas sat with John and I and we waited for Jack to take his last breath. We watched Jack breathe while time was quickly slipping away, but Dr. Rivas continued to encourage John and I that we were prepared for Jack’s death and that it was what we had we had prepared for long before that moment. After what seemed like hours had passed, Jack bounced back and we were allowed to return to our room as if nothing had happened. We were just so happy to see our son, and simply just watched him breathe.
I remember my first Mother's Day in the hospital room and the NICU staff made a flower with my son’s footprints. The staff at the hospital opened their rooms and waiting rooms, and any space that they could afford to accommodate our large family and many friends. At one point, Dr. Rivas took my family into a conference room and prepared them for the long hours we were facing with Jack’s disease. I have never heard of such care being extended to a patient’s family.
How exciting it was to actually be a mom, and then the best gift was taking our son home within a few days. Being home presented it own set of challenges...sleep deprivation, DNR’s, late night feedings with a feeding tube, Hospice care for an infant, inserting feeding tubes that Jack kept pulling out, etc... Jack was a happy baby despite all the difficulties he faced, and we enjoyed watching him grow.
On June 9, 2005, just five short weeks after his birth, Jack lost his fight to OI. Our life is drastically different, and we couldn't imagine living life without Jack, as short as it may have been. I have been asked on several occasions, was there anything I would have done differently and my answer is always no. You live in the moment and for the moment. You make the best decisions based on the information you have. Jack was a gift to my family. Through his memory, we are able to give to others and help those in need.