Michael’s ABS Story

Michael Daniel, was born with Amniotic Band Syndrome (ABS) affecting his right hand and his left foot. While we would have never wished for Michael to be born with differences, we wouldn’t trade him for anything. Michael is one special child we love him so much.

When we decided to start our family we had difficulty conceiving. After a year Wendy had invetro-fertilization. With much praying from our friends and family, to our amazement Wendy became pregnant. We were going to have a baby!

Our Fertility Specialist decided in the 3rd month Wendy should have amniocentesis. We waited days and days on pins and needles until we received the results and with great joy we learned that we were going to have twins, two boys.

Wendy was considered a high risk pregnancy due to her low progesterone levels. With many sonograms it all seem so perfect, two boys two scrotums, twenty fingers, and twenty toes. We began to relax at this point knowing everything was going well. As Wendy was getting closer to her due date, the boys still didn’t drop into position. It was then that our OBGYN decided we had to have a c-section. Twin A was heading into position and Twin B was in a breech position. We were given the opportunity to decide on a due date — we choose November 4, 1998. At 5:43 p.m. Joseph Matthew was brought into our world and 1 minute later at 5:44 p.m. our Michael Daniel was born.

While they were stitching Wendy up, I went over to the bassinets where my two beautiful boys were, they were both being cleaned. I saw Joseph and thanked God he was fine. I then went over to view Michael. The nurses were all around him taking notes. Michael didn’t have full length fingers on his right hand and they were all attached as a web hand, except for his thumb, on his left foot he had no toes. All I saw there were tiny little bulbs and his large toe growing under the skin. There was a large band wrapped around Michael’s left ankle and a large skin tag hanging from the band. The band reduced circulation causing his left leg ¾ shorter then his right leg. There was actually a tiny band wrapped around Michael pinkie toe which had caused his pinkie nail not to grow the proper way.

I knew that Wendy was not going to be able to see Michael right away, but would be able to see and hold Joseph. I knew the question would be asked where is Michael? Wendy’s sister and I told her about Michael. Wendy didn’t care all she wanted was to see him and hold him.

The following day, Wendy was able to see her precious son Michael for the first time. He was in ICU hooked up to so many wires with a pacifier in his mouth, Michael loved his pacifier. Michael was being treated for jaundice, reflux and low platelets. After being in the hospital for 3 weeks Michael was then released from Victory Memorial Hospital and able to come home to his family.

The next few weeks were an emotional roller coaster, being parents for the first time with twin little boys, and being parents of a child who has ABS.

MICHAEL’S TREATMENT:

Michael had his first surgery when he was 10 months old. He had z-plasty surgery around his left ankle to release the band and remove the skin tag and plastic surgery to separate his pointer finger on his right hand including skin grafting using skin from his right groin area. After the surgery Michael was in a cast so he wouldn’t bang into his hand. Through this all Michael has been a trooper and a great inspiration. With his light blonde hair and big blue eyes, he is always smiling, kind, and so sweet, you would never believe this child is and will be undergoing several surgeries.

When he turned 14 months, Michael, under went another surgery, to separate his middle finger from his ring finger, again with skin grafting and removal of the skin from his right groin area, once again Michael had a cast on. Not able to walk, not able to talk.

Michael needs a prosthetic shoe (extra rubber on the bottom of his shoe to give him the length) and he will also need an orthotic inside the shoe due to the fact that his foot has no toes.

When Michael turned 16 months, he under went a third surgery, separation of his ring finger from his pinkie and skin grafting and removal of the skin from his left groin area.

In these past 2 ½ years our lives have changed in ways that I can’t even explain. Michael is a strong little boy who has taught us that life has its differences and that we are all put on the earth differently and for a reason.

UPDATE

On Dec. 2006 Michael underwent another surgery, to insert a pin in his foot to push up a bone that is under his foot which is causing a calas and also the bone was growing downward instead of straight toward his toe. Michael has no toes on his left foot and also as time goes by his left leg is not growing as fast as his right leg.

There is a 2 inch leg difference, but we decided not to do anything just keep an eye on it, because if it got worse we would have problems. Dr. Minkowitz has been our true angel for all she is doing for our son. 3 years ago Dr. Minkowitz, started a bone scan, and said for the next 3 years we will have an x-ray on the leg difference. So far everything was going well for the time, but we knew we had a long road ahead of us. Michael’s pin surgery was performed by Dr. Barbara Minkowitz, his orthopedic Surgeon at Staten Island University Hospital, NY.

UPDATE

Another year has gone by and a bone xray was performed on Michael by Dr. Minkowitz, and this time there was a 4 inch leg difference. Dr. Minkowitz advised us that this was not good because it would cause problems with his hip and spine and that we had to perform surgery. With much thought on what was the best choice for Michael, either slow the growth on his right leg since it has been growing at a normal stage or our second choice was to have leg lengthening performed on his left leg.

On September 10, 2007 Michael underwent a left leg lengthening at Morristown Memorial Hospital, NJ the surgery was performed by his surgeon Dr. Barbara Minkowitz. Dr. Minowitz, has been one of the most wonderful and caring doctors we have ever met. She has been working with our son since he was very young. All we can say is she makes Michael feel very at ease and shows a lot of care and concern.

Michael is now 8 ½ years old and we know that he is still in a growing stage, we shall what and see what waits ahead.

UPDATE – December 26, 2007

At Morristown University Hospital, Michael had his leg lengthening device removed. YEAH! Michael, has gained his length, and now his 2 knees are level and the length is exactly where we want it, along with a few hamstring lengthening as well, our angel Dr. Barbara Minkowitz, came through it again and the surgery was a success. Michael, now has a cast on is left leg from his thigh to his foot and will continue to wear it for 6 or so weeks. Thanks to Dr. Barbara Minkowitz, who is a wonderful, dedicated and caring surgeon, my son’s wish is now complete.

UPDATE January 15, 2008

Michael wish is now on his way to walking with his 2 legs and no lift on his shoe. His full legged cast has been removed, his leg is nice and straight, due to the hamstring lengthening, YEAH! for Michael. He has lots of therapy ahead of him but, we know in our hearts he will come through this as well.

UPDATE 8/17/14

Michael is doing great, his first lengthening was a success at the age of 10. Now he is 15 1/2 and he required a second leg lengthening. This time it was done on his left thigh. They broke his bone and inserted under the skin a magnetic lengthening device which you will not see from the outside of his leg. The only way to lengthen is with a magnetic machine that you place on the outer side of his thigh in a assigned area. My Son just had this surgery 2 days ago and even though he will not be able to put any weight on that left leg he is on crutches and doing great. His surgery was called left femoral osteotomy and intramedullary nail. The medical word for his condition is Left Femoral osteotomy and intramedullary nail. He also had Tibial lengthening, amniotic band syndrome.

Mario & Wendy