Twin Love

It’s not about what you planned,
Or what you would have liked…
It’s about what you have been given,
And what you choose to do with it…

Dec 2012, I hesitated in announcing the birth of our twin girls. I was in shock about Trinity’s amniotic banding. Actually, I was completely broken. It was the first time in my life that I let the darkness take me down, way way down. I truly didn’t think I would be ok.

What should have been a joyous event, a successful natural birth of our miracle twin girls, after a very difficult pregnancy, was marred by my reaction to my first born baby.

2.06pm they placed Trinity Joy on my chest…“There is something wrong with her” I was screaming. The doctors were telling me not to push, I was growing horrible feeling about the baby I held in my arms while the doctors were shoving the arm of the second twin back into me so they could get her out head first.

“There is something wrong with her hands!!” I was frantic, screaming, I needed help, someone to listen to me, but it was at that moment all about the next baby, Charlee Hope.

So down I crashed, mentally, emotionally and I am sure verbally… “What have I done?” I thought, we tried so hard to save these 2 girls from the clutches of Twin-to-twin Transfusion Syndrome that I didn’t stop to think that maybe they weren’t meant to be here. I had in my mind, birthed monsters, babies that I was sure were doomed and me along with them.

2.15pm twin 2 entered the world. Poor Charlee, she had an expected heart condition and she was born blue and was worked on instantly and after 9 mins was breathing on her own, but I was totally consumed with Trinity, with an ugly darkness in me, I didn’t even want to hold Charlee before they took her to the special care nursery, I didn’t even want the baby I held in my arms. I was so broken.

I cried and cried and cried, I demanded someone come and release the band that was constricting my babies thumb, I wasn’t leaving the birthing room without a surgeon seeing her! “Please” I thought, “Please at least save her thumb?”

Trinity was missing an index finger and the end of her ring finger on the opposite hand, she had an angry band around her thumb and her thumb was swollen like a balloon and black in colour, it looked sore and well, it frightened me. She had scars of rings on both wrists and on other fingers and toes, she is so incredibly lucky to have her hands! But her thumb, it was the end of my strength.

They told me it would ‘most likely self-amputate’ !!!! “Oh God, WHEN!? When I am feeding her, or bathing her or cuddling her? Maybe if I don’t cuddle her too much, it will be ok?” She was also born jaundice, so the whites of her eyes were yellow and because of my mental state a thought she must have also been blind. She wasn’t, but at that stage I was, I could see nothing but darkness about having a child that wasn’t ‘normal’. Dear Lord, I was SO BLIND. I thank God every day for opening my heart to the light that is true LOVE.

I now don’t have any problems with Trinity’s hands and sharing is my form of counselling.

Over the first months of the girls lives I needed help to clean, handle and manage Trinity’s thumb BUT a miracle was happening right before our eyes… slowly. When the black dead skin cells fell off there was pink skin underneath and we were SO relieved… over time the swelling has gone down to normal and it looks like the only plastic surgery she might need is on the bands to ensure they grow with her rather than cause any more constrictions, no reconstruction surgery. I can’t give her back her fingers, but her thumb works perfectly.

I look at her hands now, and I kiss them, she is so lucky to have them, and we are so blessed to have both of our miracle twins. Trinity was touched by something horrible and came out a fighter!

This FAITH, is our new normal, so full of love and acceptance and I want to influence every new parent, I want the world to know that YOU CAN overcome anything placed before you. You are given this life, because you are strong enough to live it!

5 thoughts on “Twin Love

  1. I was born with ABS in 1953 affecting both hands, one normal finger (l) one thumb (r) the rest small deformed digits. after years of abuse at school I spent 4 years in the army cadets wishing to prove myself, failed to join the regular army when 18 for obvious reasons. Aged 27 I successfully challenged the establishment and joined GMP as a serving Police Officer, there followed 18 months of dreadful abuse and bigotry were every other officer referred to me daily by the name ‘ fingers’. I was callously discarded before my 2 year probation period ended as senior officers were afraid it would open the flood gates to every disabled freak should I be allowed to make the grade. Thereafter I forged another career entering the construction industry where I have worked ever since in various positions as site engineer, site manager, contracts manager, project manager, etc. Life has been an interesting journey – opportunities have been taken, lost, denied, squandered, a mixture of good and bad memories. My hands have shaped my life and my personality, I feel blessed to have experienced life through the looking glass given to me by fate, more than anything my hands taught me never to give up regardless of the battle, or the mountain ahead, always be confident and patient, accept the reactions of others, love and kindness to oneself and others are human qualities we should cherish. I have a son and grandchildren, all perfectly normal. My neighbours granddaughter was born with ABS, affecting one hand, a beautiful little girl aged 4 years of age, I have reassured the parents she will be fine, maybe they look at my life and feel a small sense of comfort

  2. Thank you for sharing your story, I have a very similar story of having identical twins with twin to twin transfusion syndrome and remember praying that I would not have to have surgery in utero. Well I never did, the amniotic fluid levels were borderline until 25 weeks when it would have been too risky for surgery. I was so relieved since surgery would be putting one or both babies at risk of death. I had them at 28 weeks- didn’t see them after delivery since they went straight to the nicu. My husband was the one to tell me something was wrong with my second son’s hands and toes. I thought no way, there must be some mistake. They told me it was probably due to the low fluid levels in the sac and the inner lining breaking apart because of the limited room to grow. I remember seeing him and crying. Sad and anger is how I felt. But I never wanted him to sense me feeling any way toward him so I cherished him especially when family would look at him with sad eyes I would say he’ll be just fine. God blessed me with 2 beautiful angels for a reason. And truly they have been such a wonderful blessing. The doctors would say he may not be able to balance because he was born missing 3 toes on one foot but he runs faster than the other one! He has short fingers on both hands and a very short thumb but he compensates. They are 3 yrs old now. They are both so happy and loving. We are truly blessed to be granted such gifts. At first it may seem hard but as they grow you will see the treasures that they are and the marvels that they can do. My boys are like the best of friends. My son never looks like he is down about his hands- he knows they are different but does things in his own special way! Enjoy them everyday!

  3. my grandbaby was born with abs. she has 9 missing or deformed toes. my daughter doesn’t talk about it much but she is devastated her 2 month old daughter wasn’t born “perfect”. In fact, she seems to be distancing herself from her baby which makes me so sad. I just need to get as much information to see if anything can be done surgically. I think she is beautiful just the way she is but my daughter is afraid that other children and even parents will make fun of her or mistreat her. Is there any treatment for this?

    1. wow My grand daughter was born 6-6-07 with abs also and yes we to were devastated and ask God why and we cried she has 1 perfect hand and the other perfect to us but one her middle finger was mangled and her pinkie is maybe 1/2 long it never grows her left leg had a band at the bottom and she never got a big toe and her other 4 toes are banned together her right leg has 2 bands one loose and the other tight she has a big toe but the rest of her toes are fused together she is now 7 and she is absolutely beautiful and she is standing here as I write this and said but I am perfect and to tell your daughter to Love her new baby and God will make it alright! God bless you and keep praying, When people ask her what happened I look at them and say it could of happened to anyone your daughter did nothing wrong. We have raised a beautiful little confident little girl when she was 5 kids would ask her what happened she would say I was born like that (something I had told her to say) but the last time a child asked her she says you are not suppose to ask people things like that I was so Proud of her! I promise you it will be alright Presly and I will be praying for your family. Presly now has a baby sister who just turned 1 on September 26 her name is Paisly, and she wasn’t born with abs she is perfect but so is our Presly! Sincerely, Evonda Shirk Ada Ohio. There is surgery if you can find the right Dr.s but please don’t wait to have it if that is what you want it is cosmetic after all I am sure your grand baby is perfect also

    2. I was born in 1986 with ABS affecting my left hand, missing a couple fingers, and my baby toes are webbed on each foot. I had a surgery when I was 4 that I barely remember where they separated the digits on my hand that were webbed. Kids would always ask what happened, and I was actually a minor celebrity on the playground because of it. They thought it was cool. IAs I became a teenager, I was self conscious about it, but most people never mention it. Now if people ask, I usually give them a very serious look and say, “Shark Attack.” It usually helps relieve their discomfort. Because that’s the thing, if any one is uncomfortable , it is them, not me. I’ve heard a few rude comments here and there, but I think its given me a deep empathy for people. No one can help how they are born, be that skin color, nationality, birth defects… I hope I would be as sensitive to others regardless, but I guess I will never know. I always thought if I’d lost it in an accident or something, it might have bothered me, but I’ve always been this way, so thats just me.’I hope your daughter will realize that it will not be as much of a handicap as she fears. I just read about a man that lost both legs mountain climbing. He designed artificial ones that now allow him to compete and climb better than he did before. She has a beautiful and healthy child. Many people are not so lucky. And everyone has a friend or family member that is “different” in some kind of way. Maybe mentally handicapped or Crohn’s disease or something physical. People are kinder than you think.I think something could be done with surgery or prosthesis, but I know feet are delicate, they may want to wait and see. In any case, treat the child just as you would any other, and if any one is mean, they are ignorant because it is a wide world that is full of people that are different in all kinds of ways. . Your daughter probably just needs a little time and encouragement to adjust. It is hard being a first time mom in any case.

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