It’s late February 2009 and I just finished a phone conversation with Lonnie Somers, the founder of the Fetal Hope organization. Lonnie’s twin daughters were born with TTTS, Twin-to-Twin Transfusion Syndrome. Together Lonnie and his wife Michelle created their foundation to provide awareness, hope and support to those parents who will be affected by TTTS and other fetal syndromes.  I contacted Lonnie because his organization also helps those affected by ABS, Amniotic Band Syndrome.

In 2002 I started poking around on the internet to see if I could find information about why my body is the way it is. I came across the name Amniotic Band Syndrome on a website called WebMD. The symptoms of this condition pretty closely matched the things that are different with my body. Further investigation of pictures I had found online of people with ABS, I knew for certain was what I was born with.  It would be six years before I bothered to do anything with the information and before I realized what a gift I actually had.

The reason I contacted Fetal Hope was because I had an idea of riding my bicycle from my home in Michigan to

I was born on August 18th, 1976 at

Seven days later when my mother was released from the hospital she went straight to the

I can’t imagine what my parents went through those first few months and even throughout my childhood. I had so many doctor appointments and surgeries. I spent sometimes weeks at a time in

My stays in the hospital, as a baby then later as a child, were so long and frequent that I joked that I should have my own room. Laughter was something I picked up on early in life. If laughter was indeed the best medicine, I was going to need a lot of it. Up until my sister Jennifer was born my mom was there whenever I was. Every doctor’s visit or hospital stay she was there with me. Sometimes they had a bed for her in my room and sometimes she would sleep in the waiting room at the end of the hall. It is absolutely wonderful to have such a loving family beside me. I am certain that is how I made it through all those scary times as a child. I was never alone while going through a new surgery or recovering from the last one. I have always had family around me with words of support or even just being beside me while I went through all of it.

I am very thankful for all the times someone sat with me in a doctor’s office or waited in a waiting room for hours on end while I went through another surgical procedure to make my quality of life better. I promised myself when I was young that when I had the chance to be there for someone else I wasn’t going to turn it down. It would be a way for me to give a little something back that I had been given. To this day I still take every opportunity I can to sit with a loved one while they recover from being sick or wait the results of a medical test.

So what exactly is ABS and how did it affect me? It is a set of congenital birth defects believed to be caused by entrapment of fetal parts (usually a limb or digits) in fibrous amniotic bands while in utero. Before I was born the body parts that shows signs of ABS (arm, fingers, toes, etc.,) were caught up and entangled in string-like bands. This caused abnormalities that were present at birth. With Amniotic Banding no two cases are exactly alike. There are several features that are relatively consistent: syndactyly (webbed digits), distal ring constrictions, deformity of the nails, stunted growth of the small bones in the digits, limb length discrepancy, distal lymph edema (swelling), and congenital band indentations. ABS affects approximately 1 in every 1200 live births. It is also believed to be the cause of 2% of all miscarriages. Recent literature supports that ABS occurs more often than once thought. Up to 50% of cases have other congenital anomalies including cleft lip and palate and clubbed foot deformity. Hand and finger anomalies occur in up to 80%. I was born with all of these. A cleft lip and palate is basically a giant hole in my face between my mouth and nose. The results of the upper lip and upper jaw not being completely developed, leaving a sizeable gap in the middle of my face. I am missing parts of my ring finger and all of my middle finger on my left hand. My right hand has all of the thumb and index finger but missing most of the other three fingers. On my right leg, just below the knee was a little cartilage filled foot but no lower leg bones to support it. So this was amputated, shortly after I arrived at University of Michigan Hospital after my birth. In some cases a complete “natural” amputation of a digit(s) or limb may occur before birth or the digit(s) or limbs may be necrotic (dead) and require surgical amputation following birth. I was fitted for my first prosthesis at nine months old. I took to it pretty quickly because it gave me the freedom to keep up with the other kids. At the age of 15 months I was walking on my own with help from the prosthesis. Even to this day I would much rather wear it then to leave it off. It gives me the freedom to move when I want to and without a great deal of pain and discomfort.

ABS can sometimes be corrected with surgery before birth with new advances in technology.  This wasn’t available until the mid 90’s. It certainly wasn’t thought of in 1976.

I grew up feeling like I was the only one around who was missing a limb and some fingers.  The internet wasn’t around and all I had for evidence were the people in my hometown.  The feeling of isolation seemed to fuel this idea of life being unfair to me.  I became severely jaded and bitter at the hand that I was dealt.  The anger issues worsened as I got older and many people simply refuse to deal with me anymore.  I felt like a train wreck just waiting for the big crash to come.  I spent 15 years angry before a 2002 divorce sent me to the bottom of this self made pit of anger and frustration.  On my 30th birthday in 2006 I woke up in the morning and felt different. I felt more relaxed about life and more comfortable in my own skin.  I can’t really pinpoint a specific instance that occurred to change my direction. It quite literally happened over night.  As I became more comfortable with myself and Amniotic Band Syndrome I started to look for ways that I could help others in my situation.  My hope is that if a child knows he isn’t fighting this alone then maybe he won’t go through the horrible tortures that pity, bitterness and anger can bring.  I finally figured out I have a wonderful gift and I wouldn’t change my life for anything.  With the help of the Fetal Hope Foundation and my 2010 Bike Ride from Michigan to

If you have any questions or concerns that I might be able to help with please contact me on Facebook at www.facebook.com/rideforhope

or privately at chrisntiff2008@yahoo.com

Thank you for reading my story and for your continued support of the Fetal Hope Foundation and children and families all over the globe.

Sincerely,

Chris Bowman

John and Kelsey Palmer were so excited to be pregnant.  Kelsey was about 8 ½ weeks along when she found out she would be having twins!  Kelsey had two ultrasounds to confirm that there were two babies.  Around thirteen weeks she had a follow-up ultrasound for growth and development.  It was during this ultrasound the technician was unable to see a membrane separating the twins and when John and Kelsey were sent to a perinatologist for further ultrasound testing.  “We were very nervous that we might lose our twins,” says Kelsey.
 
During the follow up ultrasound, which Kelsey said “seemed to take forever,” they were still unable to see a membrane.  After doing a trans-vaginal ultrasound, they were able to see a membrane separating the babies. “We were both so relieved,” explains Kelsey.  “I felt like everything was going to be ok and that we both were going to be able to relax for a little.”

Over the next few weeks they just enjoyed being pregnant, with girls! They took a vacation to San Francisco and were both having fun buying baby things.  Then, around twenty-one weeks, a problem was discovered during a follow-up ultrasound.  The ultrasound tech had their doctor come in to continue the rest of the ultrasound.  At the conclusion of the ultrasound John and Kelsey were told that there was a possibility that their girls could have Twin-to-Twin Transfusion Syndrome, or TTTS.  This is when the babies share a placenta and also have connecting blood vessels.  One twin is usually the donor and one is the recipient.  Their doctor also said it appeared that one of the babies might possibly have a two vessel umbilical cord.  Normally there are three vessels.  Kelsey was told to come back in a week so they could check on the girls again. 
That next week was filled with research and worry for John and Kelsey.  After their next follow-up, the doctor told them that it looked like they had TTTS.  Their options at this point were to do nothing and just watch while our babies got sicker, or their doctor could refer them to a surgeon that specialized in TTTS laser surgery.  “We opted for the referral and went to Evergreen Medical center to see Dr. Walker.”
They decided in the meantime to name their girls. “I just thought if they were going to have to go through surgery, and there was a chance they may not survive, that we should name them now,” explains Kelsey.   “We chose Khloe (which means blooming) and Kallie (which means beautiful).  John came up with the middle names by splitting my middle name, Elizabeth, so that they would both have a part of my name.”  At this point the future was very uncertain for Khole Liz and Kallie Beth.  John and Kelsey tried to stay calm and not worry too much, even though they knew that they might not have both of their beautiful babies to love.

After seeing Dr. Walker their hopes were even worse.  He said that the girls did have TTTS and that Kallie, their smaller twin, did have a two vessel cord and her cord was also inserted on the edge of the placenta instead of the center.  This made it very difficult for her to receive adequate perfusion.  So they were faced with a very difficult decision. “Kallie was working very hard to survive, and if she were to die Khloe could die also because of their shared blood vessels,” explains Kelsey.  John and Kelsey were given the options of doing nothing, having laser surgery to separate the girls, or having the surgery and ligating off Kallie’s cord so that Khloe would be guaranteed survival.  After many tears and much discussion, John and Kelsey decided to have the surgery.  They did not, however, opt for the cord ligation because they felt that they had to give both of their babies every opportunity to survive.  “In having the surgery we were hopeful that Kallie, who was the donor, would receive increased perfusion and do better afterwards.  Neither one of us could imagine life without both of our girls,” says Kelsey.
The surgery went well, and both babies were alive and doing fine.  John and Kelsey were very relieved, and felt like everything was going to be okay.  The next day, before Kelsey was discharged, another ultrasound was performed to see how the babies were doing. “Then we received the worst news of our lives.”  Sometime during the night, Kallie Beth did not survive.  Khloe was still alive and looked to be doing well.  John and Kelsey were devastated and shocked.  They could not believe they had lost one of their babies.
 
The next several weeks were very hard.  “We both cried a lot,” says Kelsey.  “And it was hard for either of us to talk about for awhile.”  The hardest part for Kelsey, who works as a labor and delivery nurse, was when she was at work and patients would ask her what she was having.  “It was so hard to know what to say,” she says.  Kelsey continued to carry Khloe until she was thirty-nine weeks and two days, when she was born a healthy 7# 1oz.

After Khloe was born John and Kelsey had a quiet moment with both of their girls.  “Kallie still lives with us every day in our hearts, and Khloe knows that she has a sissy in heaven watching over her,” explains Kelsey.  Every year on their birthday John and Kelsey get two balloons; one for Khloe to keep and one for her to send to sissy Kallie in heaven.  “It is still hard even three years later to think that we should have two beautiful girls that look like Khloe,” says John.   “I sometimes wonder what they would have been like together and if Kallie’s personality would have been similar or different from Khloe’s.  Even though we miss Kallie so much, Khloe is our living angel, and I think we love her even more after this experience.  I know God is watching out for our angel in heaven and some day we will see her again.”
“Going through this journey has definitely made our family closer,” insists Kelsey.  John and Kelsey have also become involved with the Fetal Hope Foundation.  “It has been great to meet others who have gone through similar situations, and also to know that we are helping raise money toward something this meaningful.”