GUEST BLOGGER: TEAM AVA

GUEST BLOGGER:  Team Ava

by:  Theresa Boylan

My name is Theresa and my husband is David. We are blessed with two phenomenal children Jack 7 and Ava 4. Overall both our children were healthy happy babies and have grown into healthy children. Ava was 8lbs 4oz at birth but as she grew was always a very petite baby, then toddler. By 18 months she was no longer on the growth chart and her growth had slowed tremendously. At first it was not a concern because the chart was moving (slowly) but around 2 years old she did not grow for almost a year. Around the same time she was becoming very verbal and began complaining of knee pain, leg pain, back pain and that her belly hurt. Some days Ava would be crying from the moment she got up, some days it would start later in the day. Whenever out she always wanted to be carried or in her stroller and cried her knees hurt too much to walk. By now she was on a weight watch every 3 months and I raised my concerns often. Unfortunately there were no visible signs of anything wrong and developmentally she was 100 percent on. Ava’s walk was off but after bringing it to our Pediatrician’s attention we were told she was fine and would outgrow it. Finally in January (2012) I requested that Ava be sent to a specialist to try and find a reason for her lack of growth, if nothing else put our mind at ease.

In February Ava had an appointment to see a Gastroenterologist and Endocrinologist to finally start looking for answers. She was sent for what blood work and a full body x ray to measure her bone age and to have a baseline of her bone structure in case it was needed in the future. I will never forget the call I received from the Endocrinologist at the end February, Ava’s bone age was at 2.6 years (she is 4.4yrs) and she had bi lateral hip dysplasia. We needed to make an appointment with a pediatric Orthopedist immediately. What!! How could that be possible! I was in shock. On March 12 Ava had her first orthopedic appointment. Of course I had done my internet research and read whatever I could about hip dysplasia. I was surprised on how little information was available and what I did find was not sounding good. Needless to say I was a nervous wreck. I knew in my heart that I was about to hear something I did not want for my daughter.

Upon meeting Dr. A we all liked him immediately, most importantly Ava did. We started with another x ray to see exactly what was happening with Ava’s hips. Dr. A reviewed the x ray and delivered the news I did not want to hear… Ava had bilateral hip dislocation that she was most likely born with. Tears sprang to my eyes immediately knowing what this meant… The only way to fix this was surgery. He proceeded to explain what would need to be done. Ava will have an open reduction surgery which included a Capsulorrhaphy, Abduction lengthening, a Pelvic Osteotomy and end with a Spica cast. In layman’s terms he needed to put the ball back in the socket and everything around it needed to be reconstructed to make that happen. Not once but twice and an approximate total of 12 weeks in the Spica cast. By the end of this appointment I did not hear a word Dr. A said. I was beside myself and walked out dazed. I sobbed the whole way home and for days after I could not talk about it without crying. How do I put my baby through this!! How was this missed for 4 years!!!

On June 12 Ava had her left hip surgery. It took 4 hours and 50 minutes…The longest of my life so I thought. I’ll never forget the feeling inside me seeing her in the cast. My heart broke for my little girl. All I could think was how will we do this!! Ava did amazing and came through with flying colors. We spent four days in the hospital and 5 weeks in her pink cast. On July 18 Ava had her right hip surgery which lasted 5 hours and 15 minutes. She spent only 3 days in the hospital and will be in her purple cast for 4 weeks. When they remove the Spica cast she will then have a Petrie Cast for another 3-4 weeks.

Having a child in a Spica cast is an emotional roller coaster. It has many difficult moments but you learn to take it day by day. My heart aches for Ava every day knowing the pain she has and will endure but children are resilient! They actually handle things better then you. You learn to stay positive for them even when you’re crying inside. It is so important to raise awareness on Hip Dysplasia. As a parent until the day I received that call I knew very little about it. Doctors need to explain what it is and the research needs to be furthered so treatment can get better. It turns out Ava had the “waddle” of dysplasia and other signs that were over looked. If I had the knowledge maybe she would have been diagnosed sooner. I am so grateful to the International Hip Dysplasia Institute. I have received so much information through their sight and links attached to it. No parent wants to put their child through this and it’s great to have the support you may need to get through it.

If you have a child that was diagnosed with hip dysplasia remember you’re not alone. There are so many people out there willing to help. Remember each case is different and you need to think as positive as you can, otherwise you will drive yourself nuts! My baby is on her way to recovery and I hope so is yours! Spread the word and stay strong!! XOXOX

Read Ava’s whole story at www.boylan2001.blogspot.com. 

Together we can....together we will !