Thursday, May 31, 2007

Madeleine's leg

I have had a lot of people ask about Madeleine's surgery and what is going on. I thought everyone knew but I guess that is just me being egocentric. Here's the story....

It was February 17th 2006 and Michael and I were thrilled to have an ultrasound showing us the genders of the babies. We made guesses and talked about names. We had polls at work and discussed what would happen if we had two boys, two girls or one of each. We didn't care, of course, but the curiosity was huge! To this day I still do not know how people "keep it a surprise".

As we layed on the table the ultrasound tech announced that Baby A was a boy! I cried. I couldn't believe that I was carrying a real baby, and a baby boy. Michael and I squeezed hands and tears ran down our faces- it was real, we would be parents, we were so blessed, so lucky.

As the ultrasound tech found Baby B she said a bit hesitantly, "well, it looks like Baby B is a girl". I cried harder and Michael announced that "We had our Madeleine". We had previously agreed that if we had a girl she would be named after my late grandmother.

Soon after the splendid news the ultrasound lady left to get the radiologist. We were in the dark, but so happy. We chatted about the excitement of having a girl and a boy! Wow! We didn't even notice that it was taking the doctor a very long time. Finally, the radiologist came in and squeezed a fresh batch of ultrasound goo on my belly. She looked at me and said there was a problem with Baby B. Normally a baby has two bones in her lower leg and my baby only had one in her left leg. Also, her left leg was measuring shorter than the other. As Michael cried silent tears he asked the doctor is she was sure and what would happen. The doctor said with a sure tone that she didn't know what "it" was but no doubt it would have a major impact on the babies life.

I tried to tell Michael over and over that she would be okay, I kept thinking it. She'll be okay, she'll be okay. I pictured my tiny daughter with a walker or crutches, with shoes lifts and orthopedic braces.

The next day we were back at Swedish hospital meeting with a genetic counselor and having amnio on both babies. No, it wasn't genetic. No, they didn't know what it was or what it meant. No, they don't know why it happened. $250 please. And, if we wanted to reduce to one baby we need to make up our mind quick. We only have until 22 weeks to terminate. Terminate.

Our amnio results came back normal. We were set to meet with a pediatric orthopedist on Friday. Dr. Saliman was a young attractive doctor. She was kind and supportive. She sat down with us in her office. My huge belly stuck out, my eyes were red from crying. I'm sure we looked like a mess. She stated matter of factly... "First, let me tell you what this is and then I will tell you the treatment..."

What! There was a name? Maybe a reason?

Madeleine has Fibular Hemimelia or Fibular Deficiency. Sometime around my 6th week of pregnancy a blood clot prevented her limb bud from growing. She is missing her fibula, she has a leg length discrepancy and perhaps some deformities in her knee, ankle or foot. The treatment depends on the severity. If it is only a 5 cm or less discrepancy they can fit her with shoe lifts and ankle braces. If it is 5-10 cm and her foot looks stable we can possibly lengthen her leg. If her discrepancy is greater than 10 cm they recommend amputation of the foot. We wouldn't know the best treatment until after she was born.

We were relieved that we would not need to terminate her. We were relieved that she had a diagnoses and there was a name. We were relieved that it wouldn't affect anything else. We were horrified of the thought of amputation.

When Madeleine was born she was the most beautiful baby in the world (said the proud Mum). She has shining white blonde hair, chubby cheeks and a short leg that looked funny. I thought it was beautiful.

Michael and I chose to amputate her foot after finding out her projected limb length discrepancy is more than 12 inches. That would take 3+ limb lengthening surgeries. Dr. Mosca told us that if we lengthen she would never dance, run, climb, jump- she may be in pain. If we amputate she will do all of that and more. This sealed the deal for both Michael and me.

Madeleine will have a Syme's amputation surgery on June 28th. She will be in the hospital for 2 days. She will be in a cast for 6 weeks. She will have a prosthetic leg 4 weeks after that. She will be just fine.


Kristina said...

Great story! I can't tell you how much it means to read the words of someone that truly knows what we are going through. I love your blog!

twin power mommy said...

That story is amazing. I know all too well about hearing while your precious babies are in utero, that there is a problem. The stress involved while carrying them...
Being asked if you want to terminate the's all unreal sometimes when you really think about it.
The leg lengthening proceedure is something we will be looking into in the future. Caitlyn's Lilly leg is slightly shorter than her regular leg and it causes hip pain some days. With her shoes and brace on, it usually compensates for the length so there's no discrepancy.

It's hard to come to the conclusion of amputation. We had the appointment set for the plastic surgeon to come in and do it while she was in the NICU. It was virtually not a choice we had. We had to just cope with it, but by the mercy of God, her leg was spared.
Anyway, glad you wrote about her special leggie. Now i understand more about what happened.
Have a wonderful weekend! :D

Yaritza said...


Thank you for sharing your story.

I noticed you have a blog on your post in ICAN emails.

My nephew too was born with the same limb deficiency as your daughter.

He will be 4 this year. He amazes people that actually notice his "leggie". They always comment on how he play, and runs and climbs like a "normal" little boy! I always say...thats because he is a NORMAL little boy! :)

I wish you the best! Your children are beautiful.