Where do we start?

After coming home from CHOP, when things finally settled, we began our research.  It didn't take long to really comprehend how little information is out there on this rare condition.  Of course we made an appointment with an orthopedic surgeon at CHOP, but we wanted to explore every avenue possible.  We had that appointment in February of 2014.  We were very much looking forward to the appointment being that it was our first one and we were hoping, I guess, to hear there would be a "miracle fix."  The doctor had only had experience with 4-5 cases of macrodactyly in his entire career.  We walked away disappointed as we were not overly confident in his experience and surgery was only briefly discussed and would be discussed in greater detail once X-rays could be done.  X-rays were not recommended until August as to not expose Molly to too much radiation.

We continued our online searching and did find a blog of a mom who also has a daughter with macrodactyly.  Her toes looked just like Molly's!  We decided to contact her.  She was so nice and helpful and gave us some insight into the research she and her husband had done.  They were living in Germany at the time and their daughter had her surgery there; however, they shared with us some U.S contacts they had gathered.  We had a place to start.

Based on her recommendation as well as our own research, we made an appointment to visit with an orthopedic surgeon at Boston Children's hospital.  We took the trip up there in March, 2014.   Again, we were anxious for this appointment, especially since we drove over 6 hours.  There was a waiting room full of patients waiting to see this particular doctor.  We had one of the earlier appointments so thankfully we didn't have to wait long.  He spent about 45 minutes with us, getting to know us, letting us ask as many questions as we had, and made us feel totally comfortable.  He said there really isn't an option to leave her toes as they are.  He brought up the point that people will notice toes that look out of place, but are less likely to notice a foot with four toes that look "normal."  He discussed surgery in greater detail and said there would be 3-4 surgeries.  They would include a ray resection of her second toe, tissue debulking of the underside of the foot and epiphysiodesis of the big toe (fusing the growth plates to stop/delay growth).  His experience includes seeing 1-2 patients per year with macrodactyly.  He mentioned to us that the mutated gene that causes macrodactyly has been identified, but they don't know why it happens.  By the time we got home, he had emailed us a picture of a patient with a similar diagnosis.  The outcome was better than we had anticipated.

Although we were quite happy with the option we had just heard, we wanted to be sure to see as many doctors as possible.  We headed to Nemours Hospital in Delaware and Shriner's Hospital of Philadelphia.  The doctor at Nemours had only done one macrodactyly surgery in her career.  Although the doctor at Shriners typically sees 1 case of macrodactyly per year, he seemed too nonchalant about it.  Neither really blew us away.

Our research continued online where we found a few people through either our blog or the website limb differences.org.  The people that we've "met" who either have macrodactyly themselves or their children have it, have gone above and beyond to help us.  We were able to Skype with a woman from the UK who has macrodactyly of the hand.  She's a professional harpist, believe it or not!  She was so nice and really gave us reassurance that Molly would be ok and would adapt no matter what.  We also talked to a woman from Australia whose son has macrodactyly on two toes.  She gave us SO much helpful information and also opened our eyes to the notion of having the surgery done by a plastic surgeon.  I had wondered prior to our conversation if the orthopedic surgeon would work cooperatively with a plastic surgeon, but hadn't thought of just getting an opinion from a plastic surgeon alone.  She said since the condition largely affects the tissue, it's more of a plastic surgeon's specialty.  Her son had his surgery by a plastic surgeon and it looks great and he is running and playing like anyone else.  She gave us the plastic surgeon's contact information.  He works for Royal Children's Hospital in Melbourne, Australia.  We were able to talk to him via email and he suggested ray resection and debulking as well - same suggestions as the other doctors we had talked to. 

In August 2014, we revisited with a doctor we had previously seen and he suggested that we talk simultaneously with him and the plastic surgeon he works closely with.  I was very excited to hear this and we got an appointment with them both for October.  The plastic surgeon explained that they would make two 'v' shaped incisions on the top and bottom of Molly's foot just below her second toe. They would remove her entire toe (phalanges and metatarsal).  They would also debulk some of the tissue on the bottom of her foot.  They would not be able to debulk a lot of her big toe tissue during this surgery and also talked about a possible future partial amputation of her big toe.

After much thought and discussion and feeling like we've exhausted all options, Kevin and I felt most comfortable with the doctor in Boston.  Surgery is scheduled for December 10.  We both have very mixed emotions about this and this decision has been the most difficult decision either of us has ever had to make in our lives.  We hope that Molly one day will understand that we had her best interest in mind throughout this whole process and feel that this is the best option.