Matthew was born at 41 weeks following an amazing VBAC (vaginal birth after cesarean) with no drugs whatsoever. NONE. It was a choice we made that may have saved his life. Any drugs during the delivery may have compromised his breathing, and we weren't taking any chances.
We knew Matthew would be born with a clubbed foot. We also knew he had a dilated kidney and a small chin. When he was born, we learned that he had a cleft palate due to that small chin. This is called Pierre Robin Sequence. He also had some other anomalies (aka differences or problems or things that scare parents when they Google them even though they know better than to Google them).
With all of his “interesting” differences, he seemed very healthy and was discharged from the hospital like typical babies. He would nurse for short feedings and get pumped breast milk in bottles with squeezable bag liners. He was happy and slept prone on my chest which made me happy. His sister adored him as did the rest of the family.
We ended up in the emergency room 3 weeks later when he wasn't gaining weight. My son was not thriving. Apparently you cannot eat well if you can't breath well, and Matthew's tongue was blocking his throat often. Often… as in hundreds of times a day. This was a precarious time.
We had our 1st surgery soon after that to lengthen his jaw and put his tongue in the proper place. Matthew was also given a complete work over to find any and all anomalies and had blood taken for genetic testing.
The verdict… Matthew has 22Q.11 Deletion Syndrome. I call him my 22Qtie Pie.
There are some great eCards going viral about children with Down’s Syndrome. They say, “It’s not that I have an extra chromosome. Maybe you’re just missing one!” Well this is literally true for Matthew and other 22Qtie Pies. They are missing part of their 22nd chromosome.
This syndrome is the most common deletion syndrome, affecting more than 1 in 4000 people. It isn't widely known though, because it can manifest in so many ways. For instance, most people with this syndrome are born with severe heart defects. Matthew only had 2 minor ones that resolved on their own. We praise God daily for this.
Matthew is now 8 months old. He is still a happy boy. He has survived 4 surgeries and hopefully will only have 1 more.
I am surviving this act too. With God, I am more than surviving. I am ROCKING this act.
I have been juggling the challenge of raising 2 children, educating myself and others on this syndrome, being a wife, pumping breast milk 2-4 hours a day, writing, traveling to doctor appointments, and sleeping (on better thought, let’s disregard the sleep part.)
Having children and attempting to raise them well may be a challenge. I have always enjoyed a good challenge.
Now it’s your turn to share your challenges. Educate us on your child’s disability. Tell us about your juggling act. Also, if you've discovered some magical way to find sleep, please share. Please. PRETTY please. May God bless you!