Alexander and Levi Stewart
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Our names are Doug and Beth Stewart and we are the parents of 2 children with myotubular myopathy. They both have trachs, vents, and feeding tubes and require 24 hour skilled hands on care. They cannot swallow at all, and so we must suction their mouths so they do not choke. We also must be ready to suction their trachs as they do not have a completely productive cough. Basically, our day is mostly involved in maintaining their airways. They spent all day off their vents now wearing a Passy-Muir speaking valve; they get quite dry and so we must give them 6 drops of normal saline every 10 minutes so they don't get plugs which could occlude their airway and cause death. The boys cannot walk, crawl, or move themselves around. We spend about 4 1/2 hours a day doing various physical therapy with them. They really enjoy being active and it really strengthens them, allowing them to do all of the things they love. As most of you all have, we have completely surpassed the doctors predictions about how long the boys would live and what they would or would not be able to do.
Alexander was born prematurely at 30 weeks gestation. Due to his prematurity, we were sent from our local hospital to Rochester, a Mayo Hospital to deliver. I cannot thank God enough for that, because he would not be alive today if we had delivered in our hometown.
I had been on bed rest for 1 week when my water broke and labor started immediately. After 8 hours of trying to stop my hard labor, they finally took Alexander by c-section as he was in the frank breech position. As soon as they cut the cord, he coded (although at the time we did not know any of this as they had taken him out of the room immediately). They then spent 10 minutes resuscitating him. They told us there was something wrong with him and called him a floppy baby. They had intubated him and put him on a vent; due to his high level of need, he was being transferred to another hospital a few blocks away to the NICU.
I was able to watch Alexander the next day on closed-circuit TV. It was very difficult to see him with all the tubes and wires attached to him. He was very long and skinny, 3 lbs. and 10 oz. and 16 inches long. I was able to go over the next day to see him. It was all very shocking and scary. We spent the next 7 weeks fighting with the doctor in the NICU about doing a muscle biopsy, which was the only definitive way to know if he had myotubular myopathy as they suspected. The doctor simply wanted us to take him off the vent to die or to take him home (he would never have lived this way either). Finally, this doctor went away for a week to a conference and the other 3 doctors in the unit came to us and asked if we wanted to do the muscle biopsy while he was gone; we did and thus found out he had myotubular myopathy. We told them to give him a trach and feeding tube and we were going to take him home. It took a few more weeks to get things arranged, but at the age of 3 months, he came home!!
We knew the chances of having another child with myotubular myopathy were only 25%, and we were deciding if we were willing to take that chance when we discovered that we were already having another child!! Levi was born 1 year and 10 days later. He was born at 34 weeks gestation at Mayo. He was able to come home at the age of 6 weeks, since we knew what was wrong and needed to be done, he was able to get home sooner.
At the age of 2 months, Levi's foley catheter (it was being used as a feeding tube) migrated into his intestine and perforated. Thankfully, he just did not appear to be well although we weren't sure what was wrong, we took him to the hospital and that is where the perforation actually occurred. They rushed him into emergency surgery. He spent the next 1 1/2 months fighting for his life. He coded four times in the first 2 weeks and only the sound of my husband and my voice would bring him back. In one day, he gained 3 1/2 pounds of fluid. His skin was so tight and he was so puffy that it looked like he was going to explode like an over-inflated balloon. After 2 weeks his bowel reperforated and he had to have surgery again. He ended up going on renal dialysis, peritoneal dialysis, had a chest tube, central line, 16 IV pumps, heat lamps, G-tube, J-tube, NG tube, and was dependent on the vent (he previously could breathe some on his own). His incision would not heal and so it had to be cleaned from the inside out. Finally, after 2 months in the hospital, he was able to come home again. He spent the next 1 1/2 years vomiting up almost everything he ate, except breast milk, however it did not have enough calories to help him grow. Finally, we heard about Co-enzyme Q10 and Carnitor and put him on those to help him have more energy. Within a month he stopped vomiting. About 3 months later I found an article about Co-enzyme Q10 that said it helped to heal duodenal ulcers. His perforation had been in the duodenum. We thank God we found Co-enzyme or he probably wouldn't be alive today as he was wasting away. Finally, we also came upon a formula, Peptamen Jr., which he was able to digest and keep down; we were able to slowly wean him from breast milk onto this formula.
Both boys are doing very well know. Alexander is 6 and started kindergarten this year. He is doing very well and working on a lot of first grade work. Levi is 5 and is in pre-school. We recently discovered that he knows how to add and subtract large numbers! Both boys at the ages of 15 months knew all of their numbers, color, letters, and shapes without us teaching them. It is truly amazing to us and such a blessing that they are both so intelligent after such traumatic births and lack of oxygen many times over the years. One of the most important things we can learn from this is that love can help overcome almost any obstacle and that we should not accept anyone putting limitations on our children as that will only hinder their abilities. Never take "no" for an answer!
Our hope for the future is that they will both be able to hold a job and earn a living. Although they may still require someone to help them medically, we think the possibilities are endless!!
