Tiffany's Story

Here is a story we would like to share about Tiffany:

We are a family of five. Tiffany is the youngest, and she is 9 years old. Tiffany was born at home; she had a normal birth. When she grew older, we started noticing weird things. For example, when she would sit on her knees, she would start to cry after a while, and we wouldn't understand why. This happened often. She was also late to start walking, around 14 months. When she started to walk, she was very scared. She would cry and grip onto our clothes.

When she started to walk with more confidence, we noticed she had a waddling gait. We brought her to the family doctor, who referred Tiffany to a pediatrician.

They sent her for x-rays. After the x-rays, the doctor was very alarmed. They saw problems with her hips, so Tiffany needed to see an orthopedist.

We waited 8 months without getting a response from that referral, but we couldn't wait any longer.

Tiffany is a very strong girl, always fun and energetic. One day, she fell down and started crying. I knew she was in a lot of pain because she normally didn't cry like that. So I called the pediatrician again because we couldn't wait anymore. Tiffany was then referred to a different orthopedist at another hospital.

This orthopedist took another x-ray. He said she needed a surgery right away. He gave her an appointment for an MRI to be done before the surgery. However, later on, he said he found a space to squeeze her in for surgery. He said, don't worry, they would do the MRI when they were getting her ready for the surgery. But this didn't feel right to me. It didn't make sense to me and my husband.

We asked our friend, who is a doctor, for advice.

He came to see Tiffany and he was reminded about her daughter when she was little. We found out that he also has a daughter who happened to have been in a similar situation as Tiffany.
Our friend recommended that we do not do the surgery right away. He recommended for us to take a moment and ask the orthopedist for a referral to see a geneticist. We thought to ourselves, a geneticist? For her hips? But we said, okay. We trusted our friend.

We were so worried because we had to wait so long for the orthopedist. We were worried about another waiting list.

The orthopedist did not like my refusal of the surgery and suggestion to find another doctor, but my family doctor told me to be an advocate for Tiffany and that I had the right to refuse the surgery.

Fortunately, my family doctor was able to have Tiffany see a geneticist within two weeks. After meeting the geneticist, I was told I made the right call by refusing the surgery.
Tiffany was later seen at the bone clinic saw and we were told she doesn't need surgery yet because her bones are adjusting well so far.

Tiffany went through so many tests with her new doctor, but she was always very strong, and now, four years later, we have a diagnosis.
Her condition, DMC syndrome, is very rare. Tiffany is now 9 years old, and there is still a lot we don't know, but we are taking it one day at a time and we hope to connect to other families who are affected by DMC.