Shannon's Story
In October of 2001, my husband and I conceived our first
daughter, Alexis. We were so excited and couldn’t wait for her to
arrive. Things went smoothly throughout my pregnancy. The initial
ultrasounds were perfect, heartbeat was perfect, and I felt great.
In my 32nd week, we went to a specialist for our last
ultrasound – a 3-D ultrasound to see what Alexis looked like and to
make sure things were progressing normally. Once the ultrasound
started, we heard nothing but silence and the words “amniotic fluid
is zero, do you have a history of kidney disease in your family?”
It was devastating news. I had no amniotic fluid left, my daughter
had a kidney disease and my doctor was giving her little chance for
survival. We had no history of kidney disease in our family and he
determined that she had ARPKD. I was checked into the hospital
immediately and waited for my OB-GYN and the Neonatologist to
research this disease and decide what to do. ARPKD is rare and no
one had experienced this before so they started calling specialists
for advice. Since her heartbeat was strong, they decided to wait to
deliver so that Alexis could grow bigger and stronger.
Alexis Taylor was born by c-section on June 16th in
2002 – Father’s Day. What a gift my husband was given. She was
just beautiful, a true angel. As anticipated, she had many
problems. She did not cry or utter any sounds, her lungs were
severely underdeveloped and Alexis immediately needed ventilation.
The neonatal unit sprung into action. She needed extra care and was
flown to Children’s Hospital for special treatments and
medications. Nothing seemed to help. She had good days and bad
days and terrible days – mostly bad days. Her lungs were weak and
this added pressure to her other organs. After 2 weeks of fighting,
her body gave out and God welcomed our angel to heaven.
God blessed us right away with another pregnancy, in October of
2002 Hannah Elizabeth was conceived. It was hard to imagine that I
was going to go through all this just a year later, but because of
my age, I didn’t want to waste any time. I had a stressful
pregnancy. My “innocence” of pregnancy was gone and I was terrified
at what the future could bring. I had a “high risk” pregnancy and
had ultrasounds every 2 weeks to look for signs of ARPKD. In week
22, my amniotic fluid started to run low and I tried bed rest and
drinking lots of fluids but nothing helped, by week 24 I was
completely out of fluid.
My perinatologist recommended trying amnio infusions to help
Hannah’s fluid levels and hopefully help her lung development. An
amnio infusion is the opposite of an amniocentesis. Instead of
taking fluid out, they use a long needle and drip saline solution
into the uterus and into the amniotic sac. Lung development is
crucial in those weeks, and he was worried this pregnancy would end
the same way. So we started infusions the following day. The risks
are high – infection, hitting the umbilical cord with the needle,
and others. I was willing to try something new – anything that
might help my baby girl. I did 6 infusions overall – 3 as an
outpatient, and 3 as an inpatient because my amniotic sac ruptured.
Hannah was born on June 19th, 2003 and cried
immediately. It was music to everyone’s ears! She needed
ventilation and was driven to Children’s Hospital, where she spent
the next 2 weeks. This time, we had mostly good days. The initial
few were tough, but then the doctors took her off ventilation and
each day more medications were being stopped. She was responding
very well. She was transferred to our local hospital and spent
another 3 weeks gaining weight, getting her blood pressure
stabilized and learning how to eat. She was beautiful and such an
answer to so many prayers.
She went home after a total of 5 weeks in the NICU. She came
home on 4 medications but no other equipment. She quickly tapered
off and for Hannah’s first year, she only remained on 2 different
blood pressure medications. It was very manageable, much easier than
I thought it would be.
Hannah is now 3 ½ and is the light of so many lives. She has a
couple other complications which developed after birth – she was
diagnosed with congenital hip dysplasia at 6 months old and has had
2 surgeries to correct these. She also has hypotonia (low tone)
which gave her physical delays. She is about 6 months to a year
behind others her age. She currently has physical therapy and
occupational therapy to assist with the low tone delays. She is on
6 medications now and doctors say she is probably going to need a
kidney transplant in the next 1-3 years. My husband and I are both
a match so hopefully things will go smoothly.
She attends preschool every day and loves it. She sings and
dances around the house and no one would ever know she has any
issues, except for some physical delays. It is amazing how this
disease works. It is absolutely so different in each child. That
is what makes it so hard to predict. Doctors can’t tell you what is
going to happen to your baby, or even to your child. We were hoping
Hannah wouldn’t need a transplant until she got older, but it may be
sooner rather than later. For now, we enjoy each day and relish
each moment. We know how precious life is and how easily it can be
taken for granted.
Shannon coordinates "Regional Support" for the ARPKD/CHF
Alliance.
>Learn More
|
