Kayden was born June 19, 2001. We had no idea before he was born that he had anything wrong with him. Immediately after he was born, the doctors took him off to the side. Everything seemed fine except that I thought it was taking a long time for them to hand him to me. They called another doctor in, and I could see them using the Abu bag on him as if he wasn't breathing. It was discovered that he had a smaller jaw that caused his tongue to block his airway. They had to pry his mouth open with a piece of plastic and tape it to his face. While doing that they also found a cleft palate. Kayden was taken by helicopter to Children's Hospital, three hours away. We arrived a few hours later and were told that he had Pierre Robin, which is when the jaw does not grow all the way forward, and that he would need a trach in order to survive. They told us that his jaw would be fixed by six months of age and the cleft by one year, then everything would be fine. A couple of days later, we were told that Kayden had a VSD, a small whole in the heart. We were also told not to worry because it would go away on its own. So, even though we were very sad for our child, we knew he would be okay, so we went on to start classes on how to care for his trach.
Three long weeks later, the doctors did a routine chromosome checks and found out that our little one had Trisomy 18, an extra half of an 18th chromosome, and it was translocated to the 13th. They told us that this can cause 101 different problems, including the ones he already had. They said most babies die by two months of age, while only 10% live past a year. If that was not enough, we were told that they would be surprised if he did not have severe mental problems. Wow, what do you do with that? We were so afraid, all I could say, besides cry, was, "When can he come home? We just want him home." So, they had to run tests to see what type of g-tube to give him, since his jaw was to tight to take the bottle. He would only take about 5cc by mouth. During the tests they found that it also caused him to have malrotation, meaning that his bowels and intestines were twisted the wrong way. They had to go in and fix that, take out the appendix, and place the G-tube in all at the same time. Kayden was only three weeks old, but he came through with flying colors.
He got to come home when he was 2 months old, but one week later he got tracheal bronchitis and had to go back. While in the hospital, they found a hernia in his testicles, so they had to do surgery on that, too. We were there for three weeks. He got sick a few more times, so back and forth we went. They were all trach-related problems, as an open air way makes it easy to get sick.
Kayden had his jaw surgery on Nov. 29 th , and they had to place bars on his face that are bolted to his jaw. Those bars came out the next week. The doctors thought that he would only have the trach for a short while, but it wasn't until he was one and a half that he was able to get it out. We waited for that moment for a long time.
Kayden weighed 4 pounds and 11 ounces at birth. At 5 months, he was doing so well. He tracked things with his eyes, he could hold himself up, and he laughed. No one could believe how well he was doing. I knew he might end up being slow at some things, but you could already tell he wasn't as bad as they once thought.
At 10 months old, Kayden had cleft palate surgery, but it came undone a little so they redid it again a few months later. Today, it still is open some. When Kayden turned one we were able to teach him how to say "mom" and "dad" in sign language. Wow, was that a major breakthrough for us and for me. I thought, "Wow, another slap in the doctors' faces." He was so happy all the time and so full of life.
When Kayden was two, we had another baby boy. Kayden loved being around his two brothers Braden and Jaiden. At two he also started having 91 episodes an hour of sleep apniea, so they had to take out his adnids and uvilla. Now he only has a few episodes when he his sick.
Today Kayden is doing very well. He gets sick easily but bounces back quickly. He will be five this June, and last summer he started saying "mamma" out loud. Yep, his first word! Yeah! Of course, he only says it when he wants to and not when I want him to show off! Kayden can get into a side sitting position on his own. He scoots and rolls to get to where ever he wants. He also will sign the word more and shake his head no and push something away when he's done with it. Kayden still has a feeding tube, but would love to eat anything he could. The problem is his airway is still so tight. We do give him soft things like potatoes, pudding, ice cream, and baby foods. Kayden goes to school where he has a nurse with him at all times. He goes Tuesday through Friday for two hours a day, and he loves it. Last March we took him to California, where I'm from. We went to Disneyland. Then in August we got to go on his Make-a-Wish trip to Florida to see Disneyworld. Kayden went on all the kid rides. We didn't hold back at all, and he loved every second of it. Kayden has been through so much in such a short time, but he is a fighter. If you didn't know about his struggles you could never tell because he is always so happy with his big blue eyes with long lashes always full of joy.
My husband's name is Frank and Braden is now 7 and Jaiden is 2. They are so smart and have learned so much about Kayden. Braden knows how to work the equipment and knows what the trach is and everything. Braden even got to see Kayden being born because it happened so fast that not even the doctor made it. The nurse had to do it all. I am so proud of my little angel; he has been so strong. What a little fighter he has been! He has brought us so much joy and everyday is better than the last. Kayden has made me a better person.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.