Francesca was born on a Summer morning. Once our baby was in our room, it all become so real. We were spending time bonding with our new baby when her pediatrician walks into the room, asks our guests to please step out in the hallway, and our hearts sink. It’s at that moment that you know there is something wrong with your perfect baby. Nothing will erase that moment from my mind.
Francesca was diagnosed with DDH in both hips that very morning. She was to be “triple diapered” until a proper fitting Pavlic Harness could be ordered, in Preemie size. Both hips were dislocated at the time. While they didn’t cause her any discomfort they needed to be put properly in place. Francesca faithfully wore the harness from 5 days old to 3 months old. As new parents it was sad to see our daughter immobile, but yet it became normal to us. We were told we could then wean her out, her hips were “looking good”. After many x-rays and ultrasounds, we were excited to have our baby back. We weaned her and were so excited to finally see some progression in her gross motor skills. She had learned to roll over and sit up with assistance! We were so proud of her.
At 6 months old, Francesca had a follow up appointment with the orthopedic doctor, and after her round of x-rays, we waited, and waited for the doctor to come to our room. Something was not right. The doctor walked in and explained that her hips “looked bad” again, this time the left being worse than the right. However, this required more treatment. We were scheduled for a surgery, while they were hoping for a closed reduction, we were prepared for the very real fact that an open reduction may be needed. Nothing could have shocked us more. Our perfect baby was going to need surgery.
At 9 months old Francesca had a closed reduction done, and was placed in a Spica cast. She did fine, considering that she was suffering from RSV. She was in the cast for 10 weeks total. While in the cast she learned to “scoot” on her back to where she wanted to go. She could roll from her tummy to her back and seemed to be comfortable with her new situation. Not looking forward to her being put under again, we were excited for the cast to be removed. At just shy of 12 months her Spica was removed, and she was put into a Pavlic Harness again. According to the doctor, her hips were now “textbook perfect” and we should be done with treatments. As we slowly weaned her out of her brace, we were again overjoyed at seeing our daughter finally able to sit. The first time my girl was able to sit was at 13 months old. She started to army crawl at 15 months, and was finally walking at 16 months old.
We were excited for her 4 month follow up with her orthopedic doctor. After xrays, they suggested an MRI. Of course we were worried. We went ahead and got it done. We waited for the doctors response. We were floored to hear that the closed reduction and spica, followed by the Pavlic harness only fixed her right hip. Her left was still dislocated, lacking a true socket, and would need further treatment.
During this time we moved and were told to find a new orthopedic doctor in our new city and state. We did right away. At 18 months our stomachs dropped once again. After x-rays and a new doctor visit, they suggested surgery. However, since it is a new doctor he wants to wait and see her progression over the next 6 months. We have her follow up appointment at 24 months, and sure enough, her hip is not better, but worse. The right is fine, the left is almost without a socket. We are scheduled for a pelvic osteotomy. As parents we were devastated. She could walk, run, jump, she was fully potty trained. We had to face choosing when to do the surgery. In the summer? In the winter? When is a good time to choose for your “big” 2 year old to not walk?
At 25 months we are preparing for the surgery when we are hit with yet another bomb shell, at her pre op appointment with her pediatrician, they hear a heart murmur that has never been there before. After a cardiologist visit we are told that Francesca has IHSS, ASD, and HCM. We decide to wait on her heart and go ahead with her hips. Francesca is excited as we pull into the hospital for our “sleep over”. She had the surgery, all went well with the exception of the pelvis breaking completely and needing 2 pins to fix it. She was put into her second Spica cast. Poor thing at 2 years old, fully potty trained… now unable to move on her own. We spent 2 nights and 3 days at the hospital, dealing with her pain and learning (again) to care for a child in a Spica cast. Another specialized car seat, more diapers and depends, and the pain.
It isn’t recommended, however Francesca quickly learned to roll over, scoot, crawl and even walk and jump in her Spica. We had many x-rays to watch her healing. She was doing well, better than expected. After 2 months it was removed. She was scared, but excited. For this removal they did not sedate her, rather cut it off while she was awake. She started walking that very day!
She had a follow up and again we are being told that it is “text book perfect”. We were able to schedule her to have the pins removed. About a month later she had her 4th hip surgery. Again the fears rush in, being a parent. She pulled through just fine and we went home the same day! She had some pain, but was very happy to be able to stay at home this time. The orthopedic doctor said that everything looks so good that we don’t have to return for 6 months! We haven’t gone this long without seeing the orthopedic team since she was born!
We will see from here, however we are hopeful that after all of the “devices” used to fix our daughter, that she is finally able to lead a normal life. Francesca is now 3 years old, she has been in a Pavlic Harness for 6 months, and a Spica cast for another 5 months. 11 months total, nearly ONE THIRD of her life has been spent restricted, immobile. But as first time parents, it all seemed very normal to us! Francesca has a little sister, born with perfect hips. We didn’t realize how much care it took with Francesca, because you just do it… without thinking about how “hard” it is to have a baby that isn’t “normal”. Francesca and her sister took their “first steps” together, after her second Spica cast was removed. It was heart wrenching, beautiful, and I wouldn’t change that moment.
Despite our worries Francesca walks with only a mild limp. She is physically able to do everything a “normal” 3 year old would be able to, with one exception. She cannot walk up and down stairs. But that will come. Since then she has had her first dance class and did wonderful! Thinking back we were so worried that she would never walk, or walk normally, let alone be able to jump, dance, run and play with other kids her age. It was a long road, and I hope that this is the end of her hip surgeries and our journey with DDH, but I wouldn’t change a thing. She is a perfect girl and looking at her you would never know that she had any issues. After this 6 month follow up we will be able to just follow up with the orthopedic doctor every year until she is done growing. We are hoping for the best, as always prepared for the worst.
Now that Francesca’s hip seems to be fixed, we can focus on her heart and her upcoming open heart surgeries.
Update – 2011
Franceca was in for a check up and is nearly 100% “textbook” after her osteotomy, which is fantastic!