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"You try and make sense of the complex lessons that this child has taught you
and try to move on with life, a different and better person."
~Jennifer and Kevin Ayers
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My
daughter, Caterina Mary Ayers was born with Full Trisomy 13 on March 6, 2006
and passed away on May 3, 2006. I had a very normal, healthy, pregnancy
with a very unlikely outcome. I found your site shortly after we received
her diagnosis when she was one week old. I scoured the pages looking for
information or a story that sounded similar to Caterina's case. I couldn't
believe that my child was born with a syndrome that doctors knew so little
about. I am writing Caterina’s story so that maybe it will help other
parents looking for information.
We knew that something was wrong as soon as Caterina was born. She was born
with malformed ears and an extra digit on her left hand - they immediately
ordered a chromosome analysis and started running a battery of tests. They
checked out her heart, her kidneys, and her spinal cord. I felt like every
couple of hours there would be another doctor telling us that there was
potentially something else wrong. With the exception of a tethered spinal
cord, everything seemed to check out and doctors tried to reassure us that
everything could be fixed. Her tethered spinal cord was an easy procedure,
the polydacty was a minor procedure and she could have reconstruction on her
ears. It was too soon to tell the extent of her hearing loss and the extent
of her vision. They sent us home and our pediatrician set up some
appointments with a cranial facial clinic to address some of the issues. By
the end of the first emotional week of Caterina’s life my husband and I were
finally coming to terms with the fact that it would be a hard road but we
would take it one obstacle at a time, and then the preliminary chromosome
report came back. We were called into Caterina’s pediatrician office and
were given the diagnosis. We were told that they had to check the medical
books because Trisomy 13 is so rare. They went over the awful and
shattering statistics and sent us home shocked and devastated. A few hours
later Caterina started turning blue. We kept being told that she had
bruising from the delivery but I did not like the way she looked.
 We rushed
her to the emergency room where when we gave the ER doctors her diagnosis
they asked us what our plans were for this child. My husband and I did not
know how to answer the question. After realizing that we had just received
the T13 diagnosis they transferred us to Fairfax Children’s Hospital. She
had a chest X-ray and they saw some cloudiness but couldn’t nail down why
she was turning blue. We ordered a CAT scan because I couldn’t understand
how nothing showed up in any of my ultrasounds. Her brain appeared to be
normal. We met with a lot of specialists who examined her and gave the same
report- incompatible with life. Difficult decisions would lie ahead. After
two days we had enough and we decided to take her home. She was hooked up to
oxygen to help with her breathing and was put on weekly hospice visits.
After a few weeks with the exception of her apnea spells and the oxygen she
seemed to be doing OK. We started changing our focus from waiting for her to
die to what if she lives. We celebrated her one-month birthday, we had a
family BBQ, we went on a road trip to Long Island, NY and she met her
great-grandmothers and tons of cousins and we took her to the beach on
Easter Sunday. We broke all of the parenting rules – tons of visitors from
family and friends – a finger full of brownie mix and a chocolate milk shake
and she slept in between my husband and I every night. We took a lifetime
of photos and tried to make as many memories as possible in such a short
amount of time.
 When we returned from our road trip I noticed a change in Caterina. Her
coloring on her legs and stomach seemed to be gray. A doctor friend of mine
told me that the oxygen was moving to her most important organ, her brain.
She started to eat less, sleep more and her apnea spells became longer and
longer. I knew she was failing and called in the grandparents. We
administered morphine and tried to keep her as comfortable as possible. She
died on May 3rd at home of respiratory failure after a day and a half of
fighting to stay alive. It was the most excruciating day and a half of my
life but I do not for a second regret the 59 days I had with my daughter.
We love her dearly and miss her terribly.
Each parent of Trisomy-13 child is faced with challenging, life altering
decisions that no parent should ever have to make. You do your best with
the information you have and try to only look forward. When it is over you
keep your child alive in your mind and in your heart. You try and make
sense of the complex lessons that this child has taught you and try to move
on with life, a different and better person.
Jennifer and Kevin Ayers
cutronejc@yahoo.com
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Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
