Jenny's Story: My Life with Crouzon Syndrome
Growing Up with Crouzon Syndrome
Being an Adult with Crouzon Syndrome
Being a Mother with Crouzon Syndrome
Dealing with Unexpected Crouzon Syndrome
Helping Your Child to Cope with Teasing
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Jenny's Inspirational Sayings II
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Operation 3 - May 2004
Melissa's toes worried us from the beginning. They looked to us like she had hands on her feet when she was born. Over time Melissa gained more control over her toes and could bring them together and they did not look as weird. The big gap between the big toe and 2nd toe stayed.
We had more concerns with Melissa's feet when she started to walk. They didn't look too bad when she was sitting as she could pull them together, but when she walked the pressure made her toes really curve outwards. We do not have a photo of how bad they were when she walked. We took her to see the orthopedic surgeon who diagnosed her as having delta halluxes. This meant that the bone in the big toe was growing curved. See the 2 year photo below. She had plastic inserts in her shoes for a year but they did nothing to help. Melissa was fine when she was wearing shoes but as soon as she went barefoot she would trip over her big toes, hold them and cry in agony. When she turned three, the orthopedic surgeon said that she needed surgery to straighten the bones in the big toes. He took out a triangular wedge of bone from within the bone to straighten it. This operation also shortened the big toe. Melissa was in plaster for 6 weeks with pins in her toes. The physiotherapist put shoes on her casts so she could walk. These casts did not slow her down. The physio was flabbergasted by Melissa as she told us that Melissa was the first child she had seen who as soon as they were up took off without any hesitation. Melissa had made cookies out of playdough and she wanted to get to the play oven to bake them! And she did.
One of the pins in her toes came out prematurely at about a month and the other was taken out after 6 weeks, in theatre. After having the casts off Melissa needed physiotherapy to help build up her calf muscles and to help the development of her gross motor skills. Her toes are now a lot straighter and she can go barefoot with no real problems. She still has the gap and will probably only be able to wear certain types of shoes. Time will tell.
In February 2005 we took Melissa back to see her surgeon who was very happy with the results. One of her big toes looks like it is slightly twisted but a x-ray showed that the bone is straight. Melissa still kicks her big toes occasionally which we told the surgeon. His suggestion was that she wear shoes to help. That was Melissa's last appointment with him.
Nick's big toes were also examined by the doctor. His toes are not as severe as Melissa's but he still has the gap and the curve. When Nick tries to walk his big toes curve outwards just like Melissa's did. The surgeon said that Nick does have the same thing and will need to have the corrective surgery when he is 2 1/2 years old.
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a day old |
3 months |
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2 years |
now |
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Melissa in her casts with her pretty shoes. |
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Nick's feet at 10 months showing the delta hallux.