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Diagnosed at age Birth

Congenital Central Hypoventilation Syndrome
Noah Golden

Noah was born on a hot morning in August. He was a month early but seemed to be in good health. Everything went according to plan. Then, after he had been placed in my arms for about 5 minutes, the nurse noticed that he had a blue tinge to his lips. She took him to the nursery to watch him. Not long after, they wheeled him into my room in an incubator and told me he was going to the NICU and would more than likely be released a few days after I went home. My daughters barely even had time to see him before they took him. We were able to get a few pictures with him and then he was gone to NICU. This was the beginning of a long road. I was discharged from the hospital without him. At first they told me he would be discharged in about a week, then another week, then the answer was "we don’t know when he will come home". They didn't know what was wrong with him. He had xrays, ekgs, eegs, ultrasounds, mri, and countless blood work. They took so much blood that he had to have 2 blood transfusions. He suffered a seizure and was put on a ventilator. We could not hold him. After about 3 weeks, they told us they thought they had a diagnosis but it would take months to find out the results from the genetic tests. They also informed us that he would probably have to be institutionalized and on a ventilator the rest of his life. We were devastated. They also informed us they were releasing Noah to Children's Hospital because they did not know what was wrong or how to treat him. When we arrived at the NICU in Children's Hospital, they immediately let us hold him. The nurses were very positive and commented frequently on how strong Noah was. Everyone was so supportive and encouraging. It was never a question of "will" he come home, it was always "when" he comes home. Eventually the blood work came back positive for Congenital Central Hypoventilation Syndrome, a very rare syndrome where the body doesn’t breathe deeply while sleeping. In order to prevent the CO2 from building up in the body, the person has to be mechanically ventilated. Thus, the diagnosis was that Noah would have to have a trach and be on a vent. They did promise, however, that he would come home, and not be in an institution. They told us that it would be a long road, but we would get through it together. They were so right. Noah immediately had a trach and was so much happier without the tube down his throat. We were able to hold him every day. He did have to have a g tube because he was not eating enough to sustain him but they promised it would not be a long-term thing. He was moved to the pulmonary unit on the 5th floor and the girls finally got to hold their brother. Noah was in the hospital until December 15. They worked really hard with us to get us the training through the Home Vent program so we could be home for Christmas. Noah is now a healthy 6-month old. He is now eating every meal by mouth and doesn’t use the g tube anymore. He will continue to be on a ventilator or mechanical ventilation for the rest of his life. However, he is off the vent while awake. He is our little miracle and is such a fighter. I cannot say enough good things about Children's Hospital. The nurses were so wonderful. They made him his own special trach box and even bought him outfits. The pulmonary nurses gave him nicknames and would go in his room and hold him when we were not there. The Home Vent staff were great teachers and extremely supportive and they continue to be there for us. I am so truly thankful to live near such a wonderful medical facility. With God's help and Children's we are now home enjoying our life.
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