Adam - A Preemie's Story

By Tina Persels

Adam in the NICU. My son Adam was born by emergency C-section at 28 weeks in February 2000. He weighed 2lb 7oz and was 14.5 inches long. To my surprise, the nurses in the NICU said he was a big preemie. Never seeing a preemie, I did not understand how he could be "big".

They always said something was different about Adam when it came to his breathing - it was VERY hard for them to get the ventilator settings right. The 3rd day of life they discovered head bleeds, we would just keep an eye on them. The same day they told us he would need a PDA surgery to close off an artery at the heart. We did that. The 11th day of life he had a bowel perforation that almost killed him. Thank God it was caught early enough to do surgery. He came out of that with an iliostomy that we kept for 6 months before take-down.

We had a few calm weeks before it was time to try to extubate him from the vent. It did not go good, he lasted about 10 hours before going into distress, they said we would try again in a week or so. After 4 tries of extubation they decided to bring in a specialist to look at his trachea, they found an unusual pollop-like growth down low in the trachea that was blocking off the airway every time they removed the ET tube. We would have to do a laser surgery to remove it along with some scar tissue that was forming due to the ET tube rubbing. They were not willing to do the surgery at that time, as he was still too small (3lb). They wanted him to be at least 4lb. When surgery time finally came we were happy that it would get us on our way to going home.

That day was probably one of the worst days of my life. We got the news in the surgery waiting room that there was a mistake during surgery and he had a 50% chance of making it. There was a tear in the lower part of his trachea that threatened air into the chest cavity. They took him back to the NICU and put him on a special vent that would hopefully not open the tear anymore. We could barely keep his sats above 70, all we could do was pray. Over the next 5 days we just waited. His sats finally went up, and when they checked the tear it was healed completely. All were amazed.

Adam with his mother. Over the next 5 months they performed one surgery after another trying to fix his trachea. All seemed to be temporary fixes, scar tissue kept growing back and trying to close off his airway. Finally in Sept. we did a surgery called a "tracheal reanastomosis". This means to go in through the chest, put him on heart-lung bypass, cut the bad part out of the trachea and reconnect it. This surgery had worked for adults, but had been unsuccessful with babies. We had no choice, it was our only option other than letting him go. So we did it, and it went very well!

His trachea was finally trouble free, but that was not the end of our problems. Since Adam had been intubated for 9 months, he had not used any of his breathing muscles, the vent breathed for him. Therefore, he could not breath on his own, he was way too weak. Then they told us we would need to give him a tracheostomy, that was one of the hardest things to take as a mother. Finally after giving him one more try to breath on his own, and failing, we trached him.

We decided to celebrate this day instead of dreading it, and I baked a "trach cake" for the whole NICU to enjoy and celebrate Adam's freedom from the ET tube. The trach ended up being the best thing we ever did for him. He developed more than ever after that.

Adam sleeping Well, there is so much more to this story than I am telling, Adam has been to hell and back in his short time alive, but he is a wonderful little 2 year old now that survived 1 year and 2 days in the hospital, 17 surgeries, and many close calls. We took him home in February of 2001, trached with a home-ventilator, feeding pump and home nursing. It was quite overwhelming but we were up for any battle after what we had just been through.

Adam in the park with his mother, Tina. They had originally told us that he would probably have severe CP with no leg movement, he was supposedly moderately to severely deaf, and cortically blind. After we finally got him home he began to blossom like you would not believe. He has full movement of his body. Once he had tubes put in he can hear and is even saying Mama, baba and lala. After we weened him off the drugs he was addicted to (morphine, methadone), his vision improved totally. My son amazes me every day. In February, 2002 he had a wonderful birthday. We just discharged the ventilator 3 days ago. The lung specialist wants to get through the RSV season, and then in the summer remove and close the tracheostomy.