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
Together we can....together we will !
