Evan’s ABS Story

babyEvan

EVAN’S BIRTH – January 19, 1993
I had wanted to get pregnant for a few years and had been on fertility medication prior to conceiving. I was very sick throughout the pregnancy but extremely happy. I would dance (as well as my bulging body would allow) and sing “Whoa-oa-oa! I feel good, do-be-do-be-do-do, I knew that I would, now….So good, so good, I got you.” Although I read the “What to Expect…” series and we went to pre-natal classes we weren’t prepared – I didn’t even have my bag packed!

I had a very easy labour. The Doctor raced me through the hospital in a wheelchair and called out “This is Mrs. Maude no time to register her, this baby’s coming now!” A short while later the Doctor examined our new baby boy. Dr. Gamble calmly said that there was a little webbing between some of the baby’s fingers that a plastic surgeon would need to “snip” and his feet turned in a “bit”. Steve and I looked at each other and exchanged a knowing “Ohhhhh”. Steve explained that his two nephews were born with mild clubfoot and his Mom’s foot turned in slightly causing her to limp. We hadn’t even thought about this genetic-link during the pregnancy.

When Evan was given to me to nurse he was all bundled up and I don’t think I even looked at his hand or feet. I was so focused on nursing. Once settled into our hospital room I un-swaddled my baby and saw the severity of his clubfeet and hand abnormality. Evan’s feet were both turned right up the inside of his legs and three fingers on his left hand were joined together and tiny which was, we later learned, caused by Amniotic Band Syndrome (ABS).

Family History of Clubfoot:

Evan kicked off cast

Evan’s Paternal Grandmother had one foot that turned slightly and she walked with a limp. This was not recognized as something that needed treatment, she was simply instructed to “walk straight.”

Evan’s two cousins (on Dad’s side) were both born with a mild clubfoot that was easily corrected without surgery.

We aren’t sure if Evan’s clubfeet are genetic or not as amniotic band syndrome is not genetic and has a correlation with clubfeet. Evan’s younger brother Elliot does not have clubfoot or ABS.

In this picture – Evan (July 1993) with one cast on and one cast off. After 6 months of serial casting note how turned in the feet still are.

Medical Treatments

Clubfoot Serial Casting:

The morning after Evan was born treatment by serial plaster casting began. Casts were changed weekly, then bi-weekly, then monthly. The plaster casts had to be soaked in water and removed prior to the plaster clinic appointment.  This was a frustrating and exhausting experience for new parents. Evan was a very happy baby in spite of it all.

By the time he was six months old Evan was able to somehow flex his foot in the cast and then kick the cast right off. See some pictures below with a missing cast. Evan’s casts were below the knee. It is now known that a better result can be achieved by full leg casts and by not removing the casts the night before an appointment.

Hand Surgeries:

Evan’s surgery for clubfoot was delayed slightly because he first had plastic surgery on his hand. In Evan’s case, Amniotic Band Syndrome affected his left hand the pinky finger, ring finger and middle finger were webbed together, smaller than normal and missing some joints.

Evan had two surgeries for his hand the first on August 12, 1993 and the second on July 29, 1996 by Dr. Howard Clarke at the Hospital for Sick Children.

We were on a wait list for the second hand surgery. One day I noticed Evan using his paper scissors to try to separate his fingers. I called the hospital right away and they put us on a cancellation list.  The surgery happened the next week.

The second hand surgery was very hard on us. We were used to the routine and we thought it was going to be the easiest of the surgeries (at least on us). However, we started to worry when the surgery took two hours longer than expected. This operation was to separate the index and ring fingers. The ring finger had already been separated from the pinky finger and now we discovered that Evan had no major arteries in the ring finger and he might lose it — the next 24 hrs were crucial. I remember around 11:30 p.m. that night praying over Evan in the hospital room. After a while I checked Evan’s hand but I didn’t trust my own judgement, so it wasn’t until the nurse came in at 12:00 that I knew that God had answered my prayer and caused blood to flow to that finger.

Evan now has independent use of his fingers and plays the piano and guitar (left handed). Although the ring finger is always colder than the rest and his Mom always makes sure he wears mittens for fear of frost bite.

Clubfoot Surgeries:

On October 18th 1993 one foot was operated on and seven days later, on October 25, the other foot. Following the surgery Evan had plaster casts and then on January 3, 1994, just prior to his 1st birthday, the casts came off! What a joy it was to bathe Evan without worrying about casts!! After the casts were off Evan began crawling.

When the post-surgery casts came off Evan was referred to the Orthotics department of the Hospital for Sick Children. Custom made Ankle Foot Orthoses (AFO’s) were made for him. We were also given a set of exercises to try to keep his feet flexible and aid the healing of the scars.

On May 13, 1994 when Evan was sixteen months old, his brother Elliot was born. Elliot doesn’t have clubfeet or amniotic band syndrome.

One of the most memorable days of our lives would have to be August 11th, 1994 when Evan took his first steps on his own. While Daddy watched, he took his first steps (of course Mommy was in the laundry room).

Hernia Surgery:

As if four surgeries, and far too many casts to count, weren’t enough, the week before Evan started Kindergarten he was operated on for a hernia. The only problem with this was that Evan was a seasoned pro and didn’t think he wanted to go through the doors into the operating room. After thinking about it for awhile he passed on the wagon ride and walked in on his own. Before the age of 5 Evan had 5 operations.

The Good Side:

When I think about it I realize that in some ways Evan’s personality development has been positively affected by all of this. Because he couldn’t crawl until he was over one year old he developed a strong sense of his personal space and along with this an extremely long attention span.

Evan is very self-confident. He experienced some school-yard teasing such as, “you run funny” (and probably other things that Mom doesn’t know about). Evan responded with a strong assured voice, that it’s a good thing that he can run at all.

From the beginning Evan’s Dad and I always explained to people about his hand and feet. We believe that people are more accepting if they understand and aren’t made to feel embarrassed about asking. Evan is really a remarkable person who is well liked and accepted by all who know him.

Evan’s Feet age eight:

clubfeet
Under developed cafe muscles
xray of Evan’s feet February 2007

I’m so sad that we didn’t know about the Ponseti method for treating clubfeet. Because of the surgical approach Evan will have life-long issues with his feet.

  • Evan has underdeveloped calf muscles
  • toeing in
  • his heels are slightly rotated
  • he has loose ligaments so his knees are double-jointed – he needs to be careful not to hyperextend his knees
  • he rolls over on the side of his right foot when he steps
  • he has a significant leg length discrepancy – shoes are modified to accommodate this
  • if he has pain we never know as he doesn’t talk about it and never complains

Reflections on the Surgeries:

The stress of having your baby face surgery is hard to describe. The Surgeries were all hard on us, each for different reasons:

  • The first hand surgery at Sick Kids – I was “a mess” according to Evan’s Dad. For one thing I was nursing and it was so hard to not feed my crying baby when my breasts were engorged. He was so little and had never been away from me for so long.
  • Just prior to Evan’s first clubfoot surgery my breast milk started to dry up as I was pregnant with Elliot. When the surgery was over they told me to try nursing him anyway but Evan pushed me away and would only go to Daddy. I had to fight with the nurses at the hospital to bring me a cot during the day. We shared a room with a newborn jaundice baby. That night Evan stayed wide awake and I was a very exhausted pregnant Mom.
  • The second hand surgery was very hard on us as Evan nearly lost his finger.
  • The Hernia seemed like such a small thing after all the other things Evan (and his parents) had been through but he was older so it was all a lot harder on him. It was done as day surgery and he would have been better off if we had stayed over night. He was sick in the car on the way home and we felt we had rushed away before he was ready to be moved. This is the surgery he remembers. Evan talks about a yellow cloud when they were putting him under anesthetic.


Adjustments:

The reality is that there are some things Evan has to do differently or doesn’t do because of his feet and hand.

  • He plays a left handed guitar so that his little fingers don’t have to do the cording (as he did naturally on a toy guitar when he was younger)
  • His piano teacher had to modify some fingering patterns
  • The Toronto Public Health Unit supplied an Occupational Therapist to work with Evan at school for a number of weeks to teach him how to type and modify keystrokes – He is now very fast!
  • Evan switched from Soccer to Baseball because there was just too much running in Soccer, he gave up ice skating – his legs and feet just got too tired.

13 thoughts on “Evan’s ABS Story

  1. Fern graham

    I was born with Amniotic band syndrome. i was born with my middle finger on my right hand halved and joint to my ring finger which has a fused knuckle. We believe my knuckle is like that because it has the rest of my other finger infused in it. Mum and dad just taught me to except it and that it was ok. I’ve always just been happy with it when other kids asked me about it I’d just tell them that i was born like it. Some kids would say ur the girl with the missing finger eh ? Can I look at it and I would just say yea and show them. I know mine isn’t as bad as Evan’s but I have grown up to think its special. I’m 17 now and I think it’s special and I like it.

  2. Ncebakazi

    I couldn’t help myself but to cry because I relate to the Evans story. My boy was also born with Club feet and ABS. He is now 11 months old. His three fingers on his left hand were joined together. His left foot has only two toes: the big toe and the little toe. He had the band around his leg. I was afraid that his leg might get amputated when after he was born but he was lucky because the band didn’t damage his leg. You could see the bone inside and his leg was swollen, very swollen.

  3. Joanna

    Just today we have found out that our little girl who is now 19 months has been given a diagnoses ABS with no fingers on her left hand but just a tiny little thumb. She is doing so well. Am so happy that I found this site. And other than talking to a doctor have been able to understand a little more just buy reading on here. Thank you

    1. Ruth - Evan's Mom

      I’m glad that the site was helpful for you. Feel free to submit your daughter’s story to the site too.

      1. Steve Slomka

        Ruth – Thanks so much for keeping this site going. I’m a regular on the FB pages but I really like this as a source of outreach for newcomers. If you ever need any help with this, please let me know.

        1. Ruth - Evan's Mom

          Thanks Steve it is a big help when others jump in and add comments on stories and on the Guestbook. If you could check in from time to time and respond to questions that would be a great support.

  4. Katie

    I appreciate your story, and I can relate to almost every emotion you described. We went from plaster cast, to achilles tendon being cut, and now bracing. My daughter is 5. We did not know a thing from (amniotic band, causing club foot, syndactyly fingers and toes, and causing the pelvic not to grow due to the bands) until she was born. Did you see anything in the ultrasound prior?

  5. shanu

    I am a 23 old mother, having a baby with ABS . How can i build up his confident level. Pls help me

    1. Ruth - Evan's Mom

      Hi Shanu,

      My advice, for what it’s worth, is that you show him not to hide his birth difference, so he won’t be ashamed. You educate people in his life about ABS so they aren’t embarrassed to ask questions. When he goes to school encourage him to show and tell or do school presentations about ABS so his school friends know about it. And most of all love him and discipline him without putting him down, that will teach him to love himself. You’ll do fine.

      All the best, Ruth

      1. Sally

        You wrote a very long time ago….I hope your lil one is doing Great. I was born with ABS, and yes kids will be kids. There will always be rude people. But I try to remind myself how lucky I am that only my fingers and ankle/foot were affected, and not somethong lifr threatening. As a child my parents didn’t spoil me or treat my any differently than my siblings. I had chores and expectations, and they kept reminding me there were a lot of people in harder situations, “so don’t feel sorry for youself” they told me. They also taught me to be open and share my experience, because as someone else mentioed, if people know they are less likely to be judgemental.
        I thought you may benifit from hearing who someone has lived with it..and an example from what my truely amazing parents taught me! Also your lil one WILL be able to follow their dreams! I am a teacher, can play a few songs on the piano, and I type,,, also I have two awesome children! Best of wishes.

  6. Angela

    What a wonderful, dedicated and loving Mother Evan has. That you started this site to help educate others is commendable as well. I want to personally thank you in that born in 1963, I now have a medical name for my 1/2 foot. It is a very deep place inside a Mother where the strength to endure the hardships of our children come from. I would say that Evan was handpicked for you and know that you have the support and admiration of many Mothers across the web. So so proud of mine and work eagerly every day to emulate the wisdom and grace she lived and taught by example. Noble Mothers unite! Prayers2u

    1. Angela

      PS…I just noticed that Evan and I share a birthday. (Jan 19). I’ve got 30 years on him tho. So he’s my children’s ages. Now I can relate to your story on ABS and Motherhood even more. I can’t help but say I was led to your site with divine guidance…my Momma’s smilin’ down on me today! Did I not JUST write noble Mothers unite?! Thank you again, I am sure you put selfless time and effort into this site. Blessings

  7. 1lanurse

    Thank you so much for this site. I have never heard of this before. I’m an RN now working in my hospital’s referral center and when I came upon a referral from a small clinic requesting assistance for a newborn I needed to find out what I was working on! Your son seems very talented and I think it’s great that your family is able to see the positive side of challenges.

Share your thoughts