Macrodactyly - Mothering Forums

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#1 of 14 Old 01-18-2007, 02:23 PM - Thread Starter
 
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Forgive me...some of this is C & P from another thread.

Anna was born with Macrodactyly. Her left foot is deformed. The big toe, 2nd toe & forefoot are grossly enlarged...thicker, wider, longer that they should be. The other toes are smaller than they should be due to the pressure of the enlarged part pressing into the rest of the foot...distorting the shape of the rest of her foot. The 3 smaller toes are forced to curl under the foot. The middle toe (next to the 2nd toe) is actually smaller that it should be because it's growth is being stunted by the pressure) That's where we think she may be feeling the most pain...the pressure. Although there is a possibility that it is more involved than that. Macrodactyly is believed to be nerve-related.

There are 2 types of macrodactyly...one is static (where the affected part grows at the same rate as the rest of the foot) & the other is progressive (where the affected part grows faster than the rest of the foot). It appears that Anna has the progressive type.
They have to do her first surgery soon because if they do it too close to when she starts to crawl or walk...she won't. They are hoping that the first surgery will be enough that she will still learn to walk. But it will take multiple surgeries over several years to achieve a totally functional foot.

HERE are pics of her feet. They were taken from birth, 1 week & a few days ago. You can see in pics #5 & 6 how her other toes curl under her foot. (although those 2 pics don't quite show her bigger toes fully) In pic #7 you can see how much larger (especially wider & thicker) her whole left foot is.

We are waiting to see the pediatric orthopedic surgeon & the pediatric plastic surgeon at Children's Hospital. We will know more then...but have been told by our pediatrician that she will most likely be having the first surgery in March.

Although we have been told by the pediatrician that there is nothing that I could have done that could have caused it...that it is just a random thing...I can't help but look back over the pregnancy & question myself.
The tie-dying that I'd done just before she was conceived? The re-painting of rooms in the summer? The 3D ultrasound at 22 weeks?

We have decided that due to this (& the fact that our 12yo DD has an unrelated birth defect, also considered to be totally random, but also requiring surgery) that we shouldn't have any more children. We had always intended on having 7. And although my DH isn't convinced that Anna should be our last...I feel differently...I can't help but feel responsible. Not to mention how needy Anna is. I just can't imagine adding to the workload, KWIM?

It's so hard...but I will be selling her diaper stash that I worked so hard to build. (the stuff she's outgrown) I can't rationalize holding onto stuff that I paid lots of $ for that won't be used again. And parting with all of the tons of baby clothes...boxes of boy & girl stuff.
It will be even harder to let go of the dream of having another little boy. I'd always seen us with another baby boy. He's had a name for years. And a face...I'd seen him in my dreams so many times...but maybe he was just one of the spirit babies that I'd lost...

Anyway...I'm rambling now...
If any of you pray- please keep Anna in your prayers. :
Any positive energy, healthy vibes, prayers, etc. would be most appreciated. No surgery is without risk. Especially in a young baby. But if we don't do surgery there is a strong possibility that she wouldn't be able to walk.

Thanks for listening. :

Mama of 2 boys, 5 girls.grouphug.gif

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#2 of 14 Old 01-18-2007, 02:36 PM
 
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typing 1-handed, but had to reply...

Anna will definately be in my prayers & you as well.
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#3 of 14 Old 01-18-2007, 03:30 PM
 
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I'll be sending good vibes your way mama!
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#4 of 14 Old 01-18-2007, 04:16 PM
 
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I'll keep you guys in my prayers, but trust that she'll be fine
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#5 of 14 Old 01-18-2007, 07:33 PM
 
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to you and your family...
keeping you and your baby's in my thoughts
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#6 of 14 Old 01-18-2007, 09:17 PM
 
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You and Anna and your whole family are in my thoughts. So sorry you are going through this -- her condition and "letting go" on having another child. I wish you strength and peace. And I assume you will keep us all posted on her surgery and progress. We will be thinking about and praying for you.

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#7 of 14 Old 01-19-2007, 12:16 AM
 
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Thank you for taking the time to post--our family will definitely be : for all of you...especially little Anna. Keep us updated when you can.

Melissa, loving wife love.gif and mama to 4 girls now! DD 12, DD 10 1/2, DD 4, DD 2 Happily homeschool.gif, doing lots of hang.gif very little sleeping.gifof and as much as I can knit.gifsewmachine.gif reading.gif
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#8 of 14 Old 01-19-2007, 12:19 AM
 
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I'll be keeping you and sweet Anna in my thoughts.
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#9 of 14 Old 01-19-2007, 01:35 AM
 
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Thinking of you and your daughter, Anna. I hope the surgery is uneventful and wishing her a speedy recovery. Hang in there...
Paige
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#10 of 14 Old 01-19-2007, 06:44 AM
 
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Keeping you all in my prayers

Michelle, vegan mama to my two sweeties, L, 4/21/04 and C, 10/29/06 married to my Bryce for 20 years.

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#11 of 14 Old 01-19-2007, 12:42 PM
 
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I'll definitely keep her in my thoughts. I just want to give you a big hug and to convince you that you didn't do anything wrong to cause this.
Many healthy and quick healing vibes to Anna for when she has her surgery.

OUR DAUGHTERS ARE PROTECTED SHOULDN'T OUR SONS BE TOO! :
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#12 of 14 Old 01-20-2007, 12:41 AM
 
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I was just thinking of anna the other day and wondering how she was doing. Thank you for posting. i will be thinking of Anna and the rest of your family.
Amy (formerly AMB8301)

There is no way to happiness, happiness is the way.
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#13 of 14 Old 01-20-2007, 11:36 PM
 
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I was just thinking of you yesterday. Thank you for posting an update. I will be thinking of you and your beautiful girl. Best of luck with the surgery, and a for you as well.

Mama to 4 darlings. A ('03), O and K ('06), A ('09), and wife to M since 2002.
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#14 of 14 Old 07-29-2014, 11:48 AM
 
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My DD was born with macrodactyly of the L foot also. Although, my daughter's is on toes 2 and 3 and has a bulk on the bottom of her foot, which makes her foot much wider and larger in depth. She was born in 2008 and now at 5 we're finally getting some positive options for non-drastic surgical procedures. We were seeing a group of doctors in TX at TSRH from early birth through 2 years of age. We then moved to Mass, where we are now seeing a macrodactyly specialist at Children's. She referred us to an awesome plastic surgeon, which we saw today. He gave us so many options that, thankfully, will not require amputation of her toes. Initially, orthopedic macrodactyly specialist made it seem as though there was only two options: de-bulking the fatty tissue, which she did not highly recommend as the bulk could grow back or amputation of her toes! We were devastated! Today, we have regained hope and are so happy to have met with him.
By the way, we did have more children after her. It's interesting though, my oldest, who is about 10 years older than ou second DD also had an isolated issue with both her feet. She actually has severely flat feet. I never put too much though into it, until they became painful. She was born with a coalition on both her feet where her top foot bones where fused and no joint was present for mobility. She had surgery on both her feet to correct the issue. This was many years while we were still in TX. Our other two children have not presented with any other issues anywhere, as of yet. Our second DD, whom was born with the macrodactyly foot, was also born with a multi-cystic left kidney. Her body has since done away with the kidney and the right has grown in size to compensate the work load. She does not have to take medications nor live a highly restrictive life. She's very active--tons of energy and VERY strong-willed personality . Her foot has not given her any pain or issues. The only issues we are now coming to are shoes. Up until now we've been purchasing two separate size shoes at Nordstrom’s, where they separate the sizes for a sale of one pair--no need to buy two pairs! The problem now is actually fitting her into a shoe that fits her foots depth. For now sneakers are the only option and even that is highly limiting.
Do you mind connecting with me? I do not see many support groups for macrodactyly of the foot. I know it's been a while since you posted your original post, but I would love to connect with you, if possible.

I hope your daughter is doing well and is healthy!
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