Parent Spotlight: Raising Twins, One Born With Amniotic Band Syndrome

We had the pleasure of interviewing a wonderful couple about their experience as twin parents raising three children, one of which has a rare birth condition, Amniotic Band Syndrome, that changed the course of their parenting journey.  As always, we love hearing the experiences and personal anecdotes from other families raising twins. We thank them for opening up and sharing their wisdom with us. 

Ryan and his wife, Melanie are parents to three amazing kids currently living in Wyoming. Their twins just graduated from high school and their youngest daughter is entering her senior year this fall.

When did you find out you were pregnant with twins? 

At our 5 month exterior ultrasound the tech saw them both and dropped the doppler. She ran out and in walked the doctor to tell us that, in fact, we were having twins.

So, this was a surprise for your family?

Yes, we did not expect that to happen. When we got home from the ultrasound we started doing some research and figured out that we did have twins in our extended families.

Your twins are 18 now, but how did you prepare back then finding out later in your pregnancy?

None of our friends had twins at the time. We were both young and were not expecting the news. So we reached out to our doctors for advice on how to prepare as much as we could. We lived in Alaska and were lucky to have a close-knit group of friends that rallied together to help us prepare. They threw us diaper parties so that we could stock up as much as we could before our twins arrived. We didn’t have any immediate family nearby, so we really relied on our friends in those early days.

Tell us about your pregnancy experience?

I was on complete bedrest starting at 5 months due to a cervical cerclage. I’m not going to lie, it was pretty awful just laying around at home. However, the babies were both fine and I was able to deliver them full-term via natural birth. The babies weighed 6 pounds 7 ounces and 5 pounds 8 ounces. 

Tell us what Amniotic Band Syndrome is.  

Amniotic band syndrome (ABS) is a rare birth defect caused by a genetic condition, in which bands of tissue inside the amniotic sac that surrounds a baby in the womb tangle around the baby’s body causing injury. This happens when there is a random rupture, not caused by anything a mom did or didn’t do during pregnancy, in the inside sac.

If left untreated, the amniotic bands wrap tighter around the affected limbs, which can lead to limb deformity, webbed toes or fingers, or defects of the head, face, or spine.

When did you find out that one of your twins was affected by Amniotic Band Syndrom?

During all of our ultrasounds, we never knew. It wasn’t until we delivered that we found out something was different about our daughter. Our son came out first and he was healthy. Eleven minutes later our daughter was born and the doctor took her away immediately to check to see if there were any injuries. Her left hand didn’t have any fingers, it looked like an oven mitt. She had severe club feet, her thighs were out, her feet were turned inward, she had 4 toes on her left foot, and a band around her calf. Her legs and other hand were fine.  They cast her legs before we left the hospital had casts on and off until she was 2 years old. 

When did she begin having surgeries?

By the time she was 2 years old, she had 5 surgeries on her hands and feet. At 1 year old, she had her first-hand surgery. There was basically a band of skin that was wrapped around her skin that had fused together. The surgeons were able to skin graft from her waist and hip area for her hand. Her hand is now slightly deformed. It is about ½ the size of her other hand but you probably couldn’t tell unless she explained what had happened. She has full function of her hand as well.

How did you manage as parents with one child in the hospital for a month while you had a newborn and the other twin at home?

It was a team effort, as it had to be. We had to divide and conquer. I flew with our daughter to Seattle for the month for the surgeries while my wife stayed home with our 4-week old baby and our son. When it was all said and done, we had no idea what we were getting into, but we also had no other option. And we came out of it as a stronger couple and as a family as.

Do you talk to your twins about the condition that one of them was born with?

We’ve had many conversations over the years with our kids about Amniotic Band Syndrome, but we keep it light. Our son jokes that he was hogging all the space during the pregnancy. 

Did you raise your twins differently because of this?

As new parents of twins, we consciously chose to raise them the same. Our daughter watched our son crawl and she just took off. She could crawl and walk around the coffee table with her casts on. We can still hear her clunking as she crawled around the corner! She adapted to the situation. We didn’t give her special treatment, and she just rolled with it.

Were there specific things over the years that were challenging for her to overcome?

Yes, but just like everything else, she adapted and just worked through it. At school, she had a hard time with the keyboard and was able to get a special keyboard to help with her typing. When she played sports, she gave it her all. She needed physical therapy to help. 

What advice would you give to expectant parents of twins, who like you, were shocked that they were having them?

It really is awesome. If you are having twins as your first children, you won’t know any different. It is hard, yet so rewarding! By the time additional children come around, parenting will be so easy. 

Any advice for maintaining a strong marriage after twins arrive?

Make time for yourselves and your relationship. Put in the work and celebrate the small wins. It’s a team effort! We really did work as a team and still do. We used to pull our couches together and sleep side by side near the babies. Whoever’s side of the couch the crying baby was closest to had to get up. Those were the days.

We appreciate the time Mel and Ryan took to share their story with us and learning about their unique experience. They are more than happy to answer questions or be a support if you are in a similar situation. If you would like to share your unique twin parenting experiences with us, please shoot us an email at contact@twocametrue.com.