Elise's First Macrodactyly Surgery

Our 1.5 year old Elise was born with macrodactyly of her right foot.  Her first and 2nd toes are significantly larger than the rest of her foot.  There is also a lot more tissue on the sole of her foot near the 2 affected toes making her foot thicker as well. The 2 toes grow at a faster pace and are growing upwards, making it impossible for normal footwear and potential functional problems down the road. We did a lot of research and either corresponded and/or visited doctors in Chicago, Boston, Portland, Cincinnati, NYC, Italy, Zurich, Hamburg, Aschau, and several in Munich. Timing and course of treatment recommendations did vary but not to the extent that anyone said outright that any of the options were wrong. Sure, we wanted one foolproof right way based on lots of data and it caused stress to know it wouldn't be that "easy."

Due to expertise and experience, family logistics ease, insurance, and near term availability, we decided to go with Dr. Giunta in Munich.  We also very much liked Dr. Habenicht in Hamburg who has the most experience with this rare condition in children but relocating to Hamburg for a week and finding time on his schedule within just a few months wasn't going to happen.  I would easily call Dr. Habenicht the Godfather of treating this condition within Europe.  We got lucky, very lucky, that it worked out for both Dr. Giunta and Dr. Habenicht to perform the surgery together in Munich.  The intent was for academic sharing and we got lucky to time the surgery during his visit here, still pinching myself that it really worked out.  I am eternally grateful to Dr. Habenicht for really going out of his way to help Elise.  And to Dr. Giunta for coming up with the idea in the first place.

Elise's surgery was July 12 and consisted of several procedures: 1. Ray resection of the 2nd toe, 2. Tip amputation of the big toe, 3. Growth plate destruction in the big toe, 4. loosen tendon in big toe to help it lie flat and not bend upwards, 5. Debulking of as much tissue as they could to thin out the foot without affecting circulation.  They did everything they said they would and the recovery has been as they predicted as well.  Elise was put under general anesthesia for 3.5 hours.  She stayed in the hospital for 4 days.  Elise does not wear a cast, only a big bandage.  For the last 2 weeks, she was not allowed to put any weight on her foot which ended up being easier to manage than expected.  She took to crawling quickly enough.  She took very little pain medication, only ibuprofen the first few nights at home.  I only heard her complain of pain once and that was pretty soon after the surgery.  She is starting to walk a little bit now but still has to take it easy.  She isn't running laps with Paul around the dining room table.

It was recommended for Elise to wear a Class 1 Compression sock essentially all the time for a couple of years to hopefully help slow the continued growth of the foot. Parts of the foot will continue to grow at a faster rate until she reaches puberty which means she may need additional surgeries throughout her childhood.  We just don't know how many, it may be one more, it may be several.

Elise is handling the whole thing amazingly well.   Kids truly are resilient, heal so fast, and are braver and stronger than we might think a lot of the time.  I'm really proud of Elise.  I'll always remember Elise giving me a hug and kiss while looking at me right before I handed her off to go into surgery.  I'll also remember speed walking 1/4 mile down Lindwurm Strasse (think Burnside Portland folks) in my pajamas carrying Elise to the operating room due to miscommunication from staff regarding which building the surgery would take place in.  I'll also remember riding the ambulance back from one hospital building to the other with Elise and having her wake up crying and throwing up all over me right as we got back into our room where our new roommates were sitting just a few feet away having a pre-surgery discussion with the anesthesiologist.  After 3 hospital stays in Munich sharing the room with at least one person, I just couldn't get used to it and felt very uncomfortable each time.  Minutes later, Nate paid extra to get us into a private room for the rest of the stay and it helped. Worth every cent.

As for pictures, I will take my first picture of her new foot this week which I will post.  If you are interested in seeing her old foot and how it grew over time and how she still walked and jumped with it, let me know.  Here are few recent pics from the whole ordeal.

As for the rest of the family, Paul knows Elise has an "aua" and will crawl with Elise from time to time while playing which is sweet to see.  Lily was sweet letting Elise take her favorite doll Aya to the hospital, a doll she has never shared.  And she's still confident Lily, the other day when I asked her who the smartest person she knew was, she proclaimed "ME!"  Oma and Opa came to help hold down the fort and made the logistics much easier.  We are all grateful to have this done with and Elise to be in no pain.  We have our struggles.  Not being able to go outside much because Elise's foot can't be in the sun and heat is tough.  Paul always demanding a lot of attention and not being able to get as much resulting in SO.MUCH.CRYING wears us down.  Like way too often, life feels so hard when we compare it to pre-twins time.  It's all about attitude and perspective.  I get it.  It's just really tiring to find at times.


She stayed in the hospital the night before the operation.  This was right after Elise fell asleep.

 Her special foot right before going into surgery.  19 months old

Day 1. Holding her for first time right after surgery.  She was throwing up from the anesthesia and still very tired.

 Day 2. IV still in but able to eat again without throwing up and acting quite normal.

 Day 3. Fun with Daddy in hospital room.

 Day 4. About to go home.