One of This Month's Featured Families!
February 2004

Born December 10, 2003
Bilateral Cleft Lip and Palate and Pierre Robin Syndrome

My name is Brandon. I am 6 weeks old now and I was born on December 10, 2003 with a bilateral cleft lip and palate and Pierre Robin Syndrome at St. Mary Mercy Hospital in Livonia, MI.

It all started about the 20th week of my existence.  My mommy Amber and my daddy Michael took me to an ultrasound and were really excited to find out whether or not I was a boy or girl.  Mommy was hoping for a girl and daddy had a really cool name for a girl, but didn’t really care as long as I was healthy.  I had already decided that I wouldn’t be a girl and I was as healthy as could be given the situation I was in.  The ultrasound tech was really quiet and didn’t say whether everything looked good or not and brought in a doctor.  After a careful examination, he informed my mommy and daddy that I would have a cleft lip and that I was a bit on the large size which worried mommy for the rest of her pregnancy.  The answers were short and vague, and mommy and daddy didn’t know what to expect.  He recommended genetic counseling and an amniocentesis to determine if anything else was wrong.  Insurance wouldn’t pay for this and no one could clarify if this procedure would warrant anything additional before delivery.  My parents elected not to put me through this.

After they collected themselves, they searched the internet and identified our cleft lip and palate team.  Their search led them to Children’s Hospital of Detroit, where my plastic surgeon and the nurse coordinator explained what to expect at my arrival. They told mommy what to do if I wouldn’t eat and the hospital I was to deliver at didn’t know what to do.

At week 30, mommy tripped and fell and landed on her tummy.  This didn’t make me happy and I decide to give her premature labor.  This sent mommy and daddy an hour and a half away to a hospital that deals with premature deliveries.
Mommy's doctor ordered an ultrasound at week 38 which showed that I was 9 lbs., 6 oz. with a
+/- 1 lb error.  You can imagine mommy was really scared and her doctor elected a c-section to minimize my risk of becoming stuck.  The doctor also made my mommy go on complete bed rest because of high blood pressure and swollen ankles.

December big day of entering the world!  Mommy and Daddy got up early and went to the hospital because mommy was sick and that is what her doctor ordered her to do in that situation.  After the nurses helped mommy feel better, the doctor performed a scheduled c-section and I was born 9 lbs., 1 oz. at 11:10 am which began a long day.  Mommy threw up while the doctors put her back together and daddy went with me and the nurses to the nursery after mommy got to see me for a few minutes.  After surgery mommy had an allergic reaction to morphine, but the doctors and nurses were there to make sure she was okay.  Mommy spent the afternoon recovering and daddy ran between me and mommy checking on everyone.  The nurses at the hospital had been expecting me and had some special bottles, but none of them were comfortable with my situation and they couldn’t get me to eat.
Fortunately, they stopped mommy's labor,  but I tried to make my entrance once a week untill about the 36th week in mommy's tummy.

At week 34, a follow-up ultrasound showed my cleft lip was bilateral and everyone suspected the palate was involved.

At week 36, my mommy's doctor said we could start going to the hospital which was a lot closer to home where I finally delivered after all of our false alarms.  By now, mommy was tired of carrying me and wanted me out.   Since I hadn’t cooperated from day one, I decided to stay for a while which didn’t make mommy happy.
At this point the doctors immediately wanted to put a tube in me and our cleft team insisted I be transferred if this was the case.  After a bit of a fight, daddy demanded they take me to the Children’s Hospital to see a specialist.

Arrangements were made and we waited several hours for the transport team.  I did better towards evening when a nurse who had a family history of clefts happened to be assigned to me and had an idea of how to work with me.  Mommy hadn’t seen me all day because she was recovering and wasn’t sure I was hers.  After the transport team arrived, I spent 10 minutes with mommy before we went to Children’s Hospital.
At Children’s Hospital, they had an idea what to do and a few more bottles to try.  However, I still ended up with a tube to eat.   The dentist also made me an obturator and this helped me suck, but I still needed the tube.  Meanwhile, mommy had complications from the spinal block and c-section and had to endure extra procedures to correct the problems.  She was also depressed because of her limited time with me, but who wouldn’t be?  Throughout the next week, they diagnosed me with Pierre Robin Syndrome and ordered all kinds of hospital equipment for home.  I was released on December 17.  Mommy and daddy were anxious to take me home and we finally got to go after they demanded mommy and daddy learn to put the ng tubes in, learn to put the obturator in, and take CPR.
On December 18, daddy and I went for a sleep study and found out I had severe sleep apnea and quit breathing 40 times per hour.  An hour after we got home on Friday December 19, the doctor called and ordered surgery and we were off to the hospital December 22,  for mandible distraction surgery.  The hard part of this was that mommy and daddy had to watch a small child go through this and hooked up to all the machines.  To add to it, mommy and daddy had to turn my distractors twice daily to lengthen my jaw.  This surgery did wonders for my breathing and also improved my ability to hold a pacifier and suck a bottle and I have recovered now.
We are still struggling with feeding and the debate continues whether a bottle will work or I need the ng tube.  I am sure time will cure our issues, but daddy and mommy are frustrated and don’t know what to do sometimes.  Daddy can’t wait until I can go fishing with him and mommy can’t wait till I have no trouble eating, but we are just going to take it one day at a time.  Surgery to repair my lips is on March 9, 2004 and the doctors now have mommy and daddy taping my lips to stretch the skin as per the doctor’s orders.  That concludes the beginning of my story…….

Brandon Muff

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