In May of 1998, my husband Jeff and I were thrilled to learn that we would be expecting a child.  Jeff had a 7 year old son, Marcus, from a previous relationship. When we married and I was told I would not be able to have children.  Five days after we found out I was pregnant, I started to bleed.  As luck would have it, it was memorial Day weekend and my doctor was not on call.  His partner was not a very compassionate man and told me I could go to the hospital, but he wouldn't help me if I was miscarrying.  I could stay in bed for the weekend and go see the doctor on Tuesday.  Tuesday morning I called the office and spoke to the nurse and was having an ultrasound by 11:00.  What a beautiful sight to see that tiny beating heart. 

The next few months were very normal.  I felt great and everything was going along fine.  I had another ultrasound at 20 weeks and found out we were having another boy.  It didn't seem odd to me that we didn't see his face.  It never occurred to me that there might be something there.  On October 27, as I was driving home from work, I felt some leaking and thought I was starting to have some bladder problems.  I got home and realized that was not it and called the doctor's office.  I was told to go to the hospital because it was possible that my water had broken.  Upon our arrival the nurse did some tests and confirmed that my water had broken and I would be their guest until I delivered.  We were quite hopeful that I would be able to hold out for a least a couple weeks or more, but the morning of Oct. 31, Alex was born.  He was exactly 10 weeks early and weighed just 2lbs 4oz.  Although I had two sophisticated ultrasounds in the hospital, we had still never seen his face.  At Alex's delivery, my husband said that there was something wrong with his face, but I was more worried about whether Alex was breathing or not.  I had two friends with clefts and knew that a cleft could be repaired, but that wouldn't matter if he didn't live.

Alex was a real trooper.  In addition to the cleft, he was born with a shortened Achilles tendon and the thumb on his right hand is shaped like a finger and misplaced on his hand.  We had a real scare at three weeks when he acquired a staph infection and we almost lost him.  He was on a ventilator for 4 days and did very well afterwards.  He grew and gained and was able to eat from a bottle that you squeeze for him to drink the milk.  After 41 days he came home on Christmas Eve, two and a half weeks before his original due date.  What a wonderful gift!

We met Laurie Vessey while Alex was still in the NICU.  She was such a godsend.  Her knowledge was invaluable and you knew that you could talk to her and trust her from the beginning.  She is still my go-to person for all of my questions and concerns even after eight years!  Alex had his first surgery at the end of January 1999.  He had a Latham appliance placed in his palate to help close the gap in his gums.  He also had three hernias repaired that were a result of his prematurity, and a circumcision.  We spent a few days in the PICU and then went home.  The Lathum has a screw that protrudes and has to be turned twice each day.  I always felt like I was torturing my own child, but it sure made a difference.  He had a second appliance placed in April and in May he had his first lip repair along with is first set of PE tubes for his ears.  He did really well even though his mother was a wreck!  We did have to use some arm restraints  because even at that young age, he liked to pick at everything foreign.  He also went into respiratory arrest from Morphine, but that was quickly reversed thanks to the wonderful nurses and doctors working on him. 

Alex was weaned off a bottle by 11 months and had his first palate repair at 13 months.  He has had a subsequent pharyngoplasty, which is a lengthening of the palate, and several lip and nose repairs/revisions including a cartilage graft from his ear to his nose. Alex has also been through four additional sets of tubes and last spring had his bone graft from his hip to his upper jaw which brought him up to a total of 14 surgeries.  He started with a palate expander and braces at 6 and although the expander came out a few months after the bone graft, we have many more years of orthodontia ahead!

Alex was diagnosed with a severe auditory processing disorder at 6 years old and a severe sensory integration disorder at around the same time.  he as been ins Speech Therapy since he was 18 months old, both in public school and privately.  He has also been in Physical and Occupational Therapy on and off since he was 10 months old.  Alex was recently diagnosed with PDD NOS which is an Autism Spectrum Disorder.  It was a diagnosis that, although it did not come as a shock, has still been difficult to get used to.  Our son is a bright shining star in a world that can seem a bit overwhelming.  He has many hurdles to clear, but continues to persevere through it all.  He has shown by example how to take everything in stride and become stronger with each challenge. 

Laurie Vessey has always said that Alex is quite unique.  He is still trying to decide whether he wants to be Darth Vadar or Luke Skywalker when he grows up!

Thanks for taking the time to read Alex's story!

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