Abby Jo

We were thrilled to find out we were pregnant again. It would be our third child. We already had two boys and really wanted a girl. Our ultrasound was normal and indicated it would be the girl we wanted so bad!

It was a very easy pregnancy and delivery. Our doctor simply said “She is missing some digits.” My mind swirled with what else was wrong. Our first born had a cleft palate, so I asumed something else was going on. Ya know I never cried the whole time I was in the hospital. . I know I was scared. I remember being so thankful that it was only her hand. I knew even then that we were blessed.

It took awhile before I was comfortable talking about it with just anyone,but evenually became easier. Abby Jo grew and hit all milestones on time.As we watched in amazement. We fell in love each day over and over with her .God has given her such a wonderful personality!

I mean, I am so proud she’s mine. I wouldn’t change anything.She simply lights up the room. My main concern from the beginning was her self esteem. I would hate for her to change or not fully love herself. I try not to focus on the negative, but parents have to think about the hard stuff.Abby recently said she wanted two big hands . It was the first time she had really said much about it.It was weird, I had thought about this moment for three years, I just said “Well, I want a little hand.” Afterward, of course I second guess myself, I believe God gave me the words she needed.

Abby Jo is four and doing great. We showed her Haylee’s pictures and she excited that Haylee had a little hand too!

Amanda Roberts

Thomas was born at 32 ½ weeks on October 19, 2002, 3 lbs 15 ½ oz; 16 /12 inches long. Thomas is a healthy boy today because of modern medicine. If he had been conceived only a few years earlier he would not have survived.

Thomas was an identical triplet, with his brothers being conjoined twins. The twins had no chance of survival due to a malformed heart, but they were threatening the third baby’s life through a condition called Twin to Twin Transfusion Syndrome. As a result we made the tough decision to have surgery in San Francisco that would stop the sharing of blood and attempt to save Thomas. We had full knowledge that the twins would not survive the procedure.

Many weeks later an ultrasound showed Thomas had Amniotic Band Syndrome. He had a band wrapped tightly around his left leg. His foot was VERY swollen. We returned to San Francisco for surgery to save his foot. The surgery for the band was performed under general anesthesia. Thomas was also put to sleep. It was done with the use of ultrasound. A large incision was made in my abdomen to allow for maneuverability of my uterus. The incisions in the uterus itself were tiny, allowing for a small camera and the other instruments. The band itself was so tight that they actually had to cut Thomas’s leg across the band to get it to release. There was minimal bleeding on Thomas’s part, but I had a large amount that was discovered later in ultrasound as a large blood clot. On the fifth day after surgery I suddenly began gushing blood and they did everything they could to keep me from going into labor. I was only 26 weeks. They decided later that it was residual blood from the surgery that finally made it’s was out.

The risks of fetal surgery are huge, of course. Since this was my second surgery on Thomas, my water did break and I was in the hospital on bed rest for 2 months until he was born. I was lucky. Most people will go into labor within days of their water breaking. They were able to stop mine and hold it off for another 6 weeks; a much healthier age for a preemie! They were prepared for that possibility, though. I had already been given the steroids to help Thomas’s lungs develop. We were willing to risk labor, though, to try to save his foot. That risk paid off.

Thomas foot was swollen, but healthy. He also has a band around his left wrist which is minor and hasn’t been a issue. Thomas had plastic surgery, Z-plasty, Dec 19, 2002 to remove remaining scar tissue around his ankle. Today, Thomas’s left foot is growing slower than the right and is 1 ½ shoe sizes smaller. His leg is also shorter than the right. If the growth continues to lag, surgery might be considered to allow his left leg to catch up with the right.

As far as I understand, this was the first amniotic band release done in San Francisco. Obviously not a common procedure. Probably because most people don’t have as many ultrasounds as I did, so it isn’t discovered until birth or more often until the baby dies in utero.

After all he had been through in January 2003 Thomas was diagnosed with Pulmonary Stenosis and had open heart surgery on March 28, 2003. After only four days in the hospital, he came home for good. He is the treasure of our lives and I would do it all over again in a heartbeat. Thomas is a lightning bolt of energy. Wherever we go, people notice him with his toe head blonde ha and light blue eyes.

In May 2007 we had a second healthy son, Peyton with absolutely no pregnancy complications.

My daughter, Holly, was born in 2000 with Amniotic Band Syndrome and clubfoot. Here is our story….

My water broke in the 32nd week of pregnancy, but I did not go into labor. I was placed on bed rest at the hospital and was given a steroid to help her lungs develop quickly in case I did go into labor. My doctor decided to induce labor in the 34th week to prevent the risk of infection to Holly. I only had one sonogram two days before labor was induced, but the technician did not see the ABS. Holly was born 6 weeks premature with deformities on all four extremities. The steroid did help her lungs develop, because she was only placed under an oxygen tent for 5 hours and then was able to breathe room air. Her right foot was the most severe, and was diagnosed as a club foot. The band had wrapped around her leg slightly above the ankle, and she does not have toes on that foot. Her left foot was the least affected, with only her toenail missing on the big toe. Her left hand is what we call her “Mickey Mouse hand”, because she does not have a middle finger. (Her orthopedic surgeon had informed us that Mickey Mouse only has three fingers and a thumb)  At birth, the left middle finger was only a nub, not even to the first knuckle. She had surgery to remove the middle finger nub before she was 1 year old.  On her right hand, the middle finger is slightly shorter than her other fingers and does not have a fingernail.

She had a number of surgeries all before the age of 2. To correct the club foot, we visited the orthopedic surgeon once a week from the time she was three weeks old until she was three months old. Each week the orthopedic surgeon would slightly stretch her foot, more and more outward, and would cast it to keep it in place. Eventually, after three months, the foot was incredibly improved. Then, Holly had to wear a corrective shoe and brace device at night to keep the foot from turning back in. She had to wear this until she was about 14 months old. She also had plastic surgery to release the band indentations on her ankle and fingers. For her final surgery, the surgeon cut her Achilles tendon. This was done to have it grow back and to provide more flexibility to her ankle.

After her final surgery, she went back to her orthopedic doctor once a year for three years. She has only had minor problems with her foot since then. Because the make-up of her right foot is so unusual, she does not have the greatest circulation or feelings in it. We have to keep a very close eye on her foot to watch for splinters, cuts or bruises (similar to how a diabetic has to care for their feet). When she was 5 years old, a new pair of shoes gave her blisters on the back of her foot. The blister on her special foot became infected and the infection spread throughout her entire foot. Her foot swelled to twice its normal size and became impossible for her to walk on it. The doctors were concerned that the infection was so severe that her bone may have become infected, so they ordered an MRI. It was pretty hard for a 5 year old to sit completely still in a dark, loud machine for 45 minutes. Thankfully, it showed that her bone was not infected. She was given intravenous antibiotics and the infection started to clear up in about 3 days.

I know the years ahead will hold many jokes and cruel children making fun of her, but I try my hardest to prepare her for that. I, along with my family, constantly tell her that God made her special and shower her with love. I encourage her to be confident and not hide her deformities. I try to set an example for her on how to respond to children whenever adults ask me “What happened?” I simply explain Amniotic Band Syndrome, and use a tone that shows that I am completely comfortable talking about it.  Whenever I have witnessed children asking her about it, she simply says “I was just born like that” and moves on. I thank God each and every day for giving me the joy of being Holly’s mother. I truly believe that she will one day be an inspiration to other children and adults with limitations.

Updates:

**At 6 years, Holly is an amazing child. She has adapted so well to her deformities that most people don’t realize there is anything different about her until they have spent a few hours with her. She has played soccer and T-ball, and received the P.E. Award in kindergarten. In fact, most of the time she out-runs the boys in her gym class!

**At 8 years old, Holly has become an extremely athletic child. She has participated in cheerleading, soccer, basketball, and now coach-pitch baseball. She excels in every sport she tries, and amazes her coaches with her ability and drive. She recently spent a week away from home at Girl Scout camp. When I picked her up on the 5th day, I witnessed one of her new friends telling her mom about Holly. The little girl said, “Mom, I want you to meet someone. This is Holly and God made her special. She was born without any toes and she is very special”. Holly told me they discussed her birth defects a number of times and talked about how “special” she was.

Even though Holly knows she is special, she knows she will always be different from other children, too. Just the other day, Holly asked me if her special foot would ever turn into a normal foot. She had all the hope in the world that it was possible. When I told her that it most likely would never be possible, she stated how sad she was that she would never be able to wear flip flops. I am sure it doesn’t help any that I absolutely love flip flops and would wear them year round and with every outfit if I could. As a mother, you want to do anything in the world to take away your child’s sadness. I sometimes wonder if I should stop wearing flip flops, to help take away some of her sadness. It is situations and conversations like these that I have with my daughter that are the toughest. I find it is best to hug her, comfort her, and point out a very positive quality about her that not many other people have. Now if only I could find her a support group of people who can’t wear flip flops, we would be set : )

God Sent me an Angel from above on September 2001

I was a high risk pregnancy because I was only 4’ 8” tall but beside that my pregnancy was normal. I had a very healthy pregnancy and was very happy to be pregnant again with my second child. I had many visits to the doctor’s office and many ultrasounds and never once did we notice the aminotic band.

I went in for my Dr. visit 5 days before my scheduled C-section. The Dr. said I was dilated 2 centimeters and sent me to the hospital to have Haylee that night. Haylee was born C-section on a wonderful Thursday in September 2001 and the only thing I heard the Dr. say was she has a hand change. I had no idea what they were talking about and when they brought her to see me she was bundled up and I could not see anything wrong. I had to have surgery after the C-section so I did not get to see Haylee right away. When I was able to see her I remember the first thing I thought of was oh she is perfect. 10 fingers does not make you perfect because she had five and was just as perfect. She has a full wrist and small palm and 5 small nubs on her left hand.

God has been in our lives before Haylee was born but now that she is in our lives our family is Centered around God and doing his work. Haylee is still my perfect angel from above. She has done everything that a normal 10 finger child has done and then some. She is so amazing to watch. Haylee is so full of God that it amazes me everyday. She will tell you that God made her that way because He has told her he has big plans for her and I believer her.

She as always been right on time for doing things or ahead of time. She potty trained herself at a very young age. She was walking by her first birthday and even at that she just stode up and walked off. She talkes crystal clear and is smart for her age. She loves to ride her four wheeler and will do anything the other kids are doing. She does the monkey bars with out a problem and the strength she has is amazing. Haylee is now 5 and completed her first year of school and smarter then a whip. Haylee has begun making bracelets out of glass beads and you just have to look at them to believe the job she is doing. Haylee is so wonderful and she is determined to show the world God’s love and that she can do all things through Him who strengthens us. In order to do this she is helping to design and make jewelry. To see her heavenly creations, click Here.

We live in a small town and Haylee has yet to meet anyone else with ABS upper limb deficiency. Haylee would really love to make friends with other children that are going through the same thing she is going through.