‘He might have clubfoot”

by Allison

September 10, 2018

That was what the OB cheerfully told me at my 18 week ultrasound.  I was sent to a level 2 ultrasound with a specialist to find out more information.  While I googled clubfoot, I was heartbroken to find out that my baby would not be perfectly formed, but thankfully, it was something that could be fixed. Sure he would have a rough start, but he had a chance at a normal life.

At the level 2 ultrasound, we saw his curled up little legs and curled up little arms.  There was no movement.  In my first ultrasound, he was moving his arms like a drummer.  shortly after, I started feeling little wiggles.  Next ultrasound nothing.  I maintained hope because I would still occasionally feel wiggles at night.  The specialist also pointed out that his neck was extremely thick, a sign of possible mental problems.  His stomach was underdeveloped, proof that he was not swallowing and would need feeding tubes or surgery to be able to eat.  We went through all sorts of blood tests and amniocentesis to see if this was something genetic, it wasn’t.  It was a severe form of something called Arthrogryposis Multiplex Congenital Disease.  This is an umbrella term for over 300 variations of a neuromuscular degenerative disease.  There are different levels of it that include physical deformities effecting the upper or lower extremities, or both, it also includes cognitive issues, or not.  I was told it was not my fault, but that I might want to make a choice.

Now I have some medical background and a curious mind, so I googled this, joined support groups and got more testing done and spoke with many specialists.  The more information I had, the worse this baby’s life would be.  Specifically, there was a 50% birth survival rate, 50% chance of living 1 year and 50 % chance of making it to adulthood.  He would need 20-30 surgeries to look more normal, but that they might do harm harm that good.  He would likely never walk, maybe never be able to eat and we would live at the hospital.

I prayed for wisdom and strength. I prayed for a miracle.  I ate fruit, chocolate and even drank a coffee before my MRI with the hope that he had been previously sleeping and it was all a mistake.  I cried myself to sleep every night.  How can a baby so wanted, so loved be so deformed when people who don’t want babies can have a healthy one?  He was supposed to be my double rainbow.  He was supposed to keep my marriage together.  He was supposed to be a little brother.


I never thought that I would be ‘the kind of person to get an abortion’.  I came a pretty liberal family that believes in a woman’s choice.  I have given money to friends for abortion, I have driven them to planned parenthood and waited while they had their unwanted baby removed.  I have an 8 year old and had been trying to conceive for 4 years.  I had two miscarriages.  I REALLY wanted this baby.  I had never considered that someone would end a wanted pregnancy.  Yet here I was… being forced to make a choice.


Not that anyone was really forcing me…  I had a friend that was threatened by gunpoint to abort her baby.  I did not find out about this until years later when she was pregnant agan and considering her options.  She ended up having that baby.  We are no longer friends, for different reasons, but that’s another story.

My husband and I agreed that the most humane thing we could do for our son, would be to abort the pregnancy.  We are already struggling financially  and the impending hospital visits certainly wouldn’t help.  The reality is, dealing with this would have made us loose our house.  My daughter would have to stop activities like dance and karate and be homeschooled at the hospital.

I joined online support groups and interviewed AMC moms and some adults that are living with it.  I searched YouTube for sucess stories.  There were a few that were really inspiring.  AMCers have a really great outlook on life and find ways to compensate for their lack of movement in other ways.  Yet, it was still the saddest thing I have ever seen and I could not in good conscience bring someone like that into this world.  Children are already up against so much and our current political situation scares me.

There are 2 procedures in Massachusetts for late term abortions, one being they go in for a procedure, the other being L&D.  They allow this until 25 weeks.  I opted for the labor and delivery because I needed the closure.  My family needed the closure. I was 23weeks, 3days when I had the ‘procedure’.

I went in May 9th to be induced.  The staff were all wonderful ad very empathetic, except for one young doctor from Iran that scratched or pinched me when inserting the pill.  I told the nurses that I did not want him near me and to find a different doctor.  I had a private room.  My husband and mother were with me until it got late and she went home to get some sleep. I brought essential oils and a salt lamp to set the ambiance.

At 530am on May 10th, I was given the last dose of misoprople (sp?).  The cramps got really bad and i woke up my husband to bring the trashcan so I could vomit.  He then went to the nurse’s station to request Tylenol for me.  After he walked out, I delivered a beautiful, perfectly imperfect 1 pound baby boy.  We were fortunate enough to have him blessed by the hospital Chaplin and a photographer friend came and took postpartum pictures.  Our families came to visit and held our sweet angel.  My husband’s family was told that his heartbeat stopped during another ultrasound because they are all VERY Pro life and we didnt want to worry them.

Looking at his tiny  little curled up body, I know we made the right choice.  For what it was, it was a beautiful thing.  I was fortunate enough to have support of my friends and family, but I know that is not the case with everyone.  I believe that God gave us the ability to choose life and I will stand up for that, no matter the situation.

We have since planted a pink dogwood tree in my yard with his ashes as a memorial.   I also chose to pump my milk that came in on Mother’s Day and donated it to a local woman that adopts special needs babies.  That lasted about 2 weeks before it became difficult and I stopped.  Again, my choice… although other people were more freaked out about it than I was.  To me, it made sense and helped get the pressure off.

As we approach his due date, I can’t help but wonder how big and beautiful my belly would be.   I look at the pictures of his sweet little face and tiny little curly feet and wonder what he would have been like.  I have all these dates of sadness in my head now and I pray that I will get beyond them and able to interact with my friends and their babies again.  I know that sadness will never go away completely and I will always hold him in my heart with hopes that I will get to hold him again someday…  Yet, I am thankful that I live in a world where this was possible.  Had we been any other time or place, the baby would have been stillborn or disguarded at birth, ripped away from its’ mother in tears, left alone to die.  I am thankful I could make that choice and I am thankful for every drop of life that I have.

I might like to try again in the future, but for now, I am all set.  All our genetic stuff came back negative.  For now, I just have to focus on being a better version of me and my family.   Am I on birth control, no.  Should I be, maybe.  If I were to get pregnant right now?  I might have to make another choice.  For now, lambskin condoms are not so bad.

Do I have any regrets?  No, absolutely not.  I stand by my choice, as I will stand by yours.

Remember that our stories are ours to tell. We’d love to hear your story too!