Mitchell at 21 Months

Our son Mitchell was born with the mosaic form of trisomy 13. This means that some of Mitchell's cells in his body contain an extra 13th chromosome.

I had a fairly normal pregnancy until 36 1/2 weeks. I went in for my doctor's visit and was admitted immediately due to high blood pressure which later turned into a diagnosis of severe pre-eclampsea and the beginning stage of HELLP Syndrome. We induced the next morning and by 9:56pm on December 16, 2004 Mitchell John was born.

When Mitchell arrived we were all shocked to see that he had a cleft lip and palate. He was struggling to breathe so after a quick family picture, they brought Mitchell to the NICU so they could evaluate him. That night we were still in shock and yet little did we know that soon our world would be turned over as we soon find that the cleft is the least of our concerns. The next day the neonatologist came in to discuss Mitchell's condition. They had discovered that Mitchell not only had the cleft lip and palate, but also had an extra digit off of his left pinky and his heart was shifted over to the right side. With these 3 findings, the doctors thought that Mitchell may have a syndrome called trisomy 13. The preliminary test showed that they were correct, Mitchell indeed had trisomy 13. However, the doctor's were surprised to see that not all of his cells seemed to be affected. We would have to wait for the “official” results but it looked like he may have the mosaic form of the syndrome. We had never heard of trisomy 13 let alone the mosaic form. The final results confirmed that Mitchell had the mosaic form of trisomy 13. They gave us a number of 30% trisomy cells and 70% “normal” cells. This is the first time the hospital had seen a trisomy 13 mosaic so they were at loss of words. Our main question was, “is he going to be okay?” That was a question nobody could answer. Everyday in the NICU seemed to bring new challenges and more questions. We truly had to take one day at a time and some days we had to take it one hour at a time. We would find that just as good news came, bad news was just around the corner. It was a roller coaster ride we would never want anyone to go on.  

Mitchell spend 2 months in the NICU. During that time we had to learn how to feed him. This was difficult because of his cleft. When we finally got to take Mitchell home, he left with the following diagnosis: Mosaic form of Trisomy 13, cleft lip/palate, dexocardia (heart on the wrong side), extra digit, severe laryngaltrachealbronchialmalacia (floppy windpipe), and a brain bleed. Mitchell had 2 surgeries while in the NICU: hernia repair and also pyloric stinosis.

We have encountered many ups and downs in the last 22 months. At 5 months old, Mitchell's tracheamalacia ended up getting worse which caused us to make the difficult decision to put a trach in. This was the best decision we have ever made. Mitchell's life all of a sudden seemed so easy, well easier. Mitchell came out of that surgery a different baby. He gained weight easier, played longer and most of all was so much more happy. At 9 months old, Mitchell had his cleft lip and palate surgery. Mitchell did well during this surgery and he recovered rather quickly. Mitchell is now 22 months old and doing terrific. Developmentally he is behind but is learning new things weekly. He is currently working on walking and is doing a great job at it. Mitchell is also working on saying a few words as well as signing. He also does a great job of eating and drinking orally.

Mitchell is such a blessing to our family. He is such a happy little boy that seems to have a way of touching all of those who meet him. We have been through a lot in 22 months, but we consider ourselves so lucky to have been blessed with such a great son. Mitchell has shown us what life is really all about.

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You can read more about Trisomy 13 and receive incredible on-line support through the private message board on www.livingwithtrisomy13.org. 

-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.