Blog 17 - The Birth of Nick and Op #3 for Melissa - 3 years - Delta Hallux

We took Nick to see the plastic surgeon when he was 5 weeks old. Nick had a metopic ridge down his forehead which would need to be re-opened. It was decided that they would do his frontal obital advancement first (the opposite to Melissa). Interestingly, because he metopic suture had fused early meant that his eyes were not wide set which is usual in Crouzons. The fusion had pulled his eyes together. He was different. Genetic testing was done and as expected Nick had the same gene mutation as myself and Melissa. More of this, and Nick's operation, is explained in the next blog.

I did not suffer from depression because I felt more in control. Nick also could not breastfeed well because of his facial shape. I managed to get him to 6 weeks and then he went on the bottle.

Nick suffered from silent reflux which was picked up by the child health nurses. He kept his head tilted to the left and we needed to place him on his right side to lengthen those muscles in his neck.

During this time Melissa's curved big toes were being monitored. That had worried us from birth. 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. 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.

Something needed to be done. Surgeons do not like to perform operations on growing toes unless absolutely necessary because the growth plates can be affected.

Operation 3 for Melissa - May 2004 - Delta Hallux Surgery

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.

Post-script. Melissa's and Nick's toes are monitored each year. Unless their toes cause them pain they will not be operated on until the toes have stopped growing.

© 2012 by Jenny Woolsey

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