Carsen defies odds with Trisomy 15

2013-05-23 16:53:43 by Yvonne and John Hays, as posted on the blog.

After 4 long years trying to conceive, three of which we sought medical assistance, we found out we were going to have a baby.  We knew the baby was going to be a blessing because we actually conceived on our own.  We were elated and couldn't wait for the month of June to arrive.

I felt great every day of my pregnancy and each appointment was filled with good reports and normal pregnancy progression.  In May 2007, we had 4 baby showers and we received closets full of clothes, gadgets and gifts beyond belief.  Our friends, family and coworkers were as happy as we were to welcome our long awaited baby GIRL!

At 32 weeks I mentioned to the OB/GYN that I felt great but kept being told how small I looked for being 8 months pregnant.  We were sent for an ultrasound at Maternal-Fetal Medicine at Akron General.  It was there that problems were suspected.

I remember asking if I could sit up and take a break because I felt sick to my stomach at the possible news.  The doctor suspected some kind of chromosome issue because there were various abnormalities detected within the baby.  An amniocentesis was done and now we had to wait 2 weeks for results.

We left the hospital that day in utter disbelief and drove straight to the Akron Chapel and prayed.  And we prayed and we prayed and we prayed.  This was a road we were NOT prepared to travel.

At 35 weeks we received the news that our precious baby girl had Trisomy 15.  We were told how rare this chromosome abnormality is and that our baby would probably not survive.  There was minimal research available on Trisomy 15, so many assumptions had to be made and there were so many uncertainties.

We will never forget sitting in the genetics office at Akron Children's Hospital and hearing that our baby, IF she survived birth, may have severe birth defects (severe facial deformities, cardiac defects, extreme behavioral issues and "incompatible with society").  Once again, devastated!

We were referred to the Heart Center to see Dr. Patel so he could do an ultrasound prior to delivering the baby.  He was amazing.  He delivered the news regarding her multiple heart defects in such a compassionate way.

He drew pictures of the heart and spent quality time trying to explain to two first time parents, what was wrong with their baby's heart while she was still in utero.  He devised a plan for her cardiac care once she was born. That is, if she survived.

We then met Palliative Care.  They were terrific.  They had a social worker for us to speak to, and had made arrangements for hospice to come to our home and care for our baby, if we were lucky enough to made it home with her.

I was induced at 37 weeks under the supervision of neonatologist Dr. Feick.  The nurses were so kind and compassionate for the situation in which we were about to embark upon.

Our birth plan for the baby was "comfort care" as we wanted her to be as comfortable as possible for however long she would be in this world.  Carsen Christina was born June 12, 2007, at 5:26 p.m., and was breathing.  I recall the doctor telling me, "she's beautiful" as she handed her off to Dr. Feick and her team.

Two days later we were sent home to enjoy Carsen as long as we could, and as long as the good Lord would allow.  Dr. Feick called to check on us and sent  formula delivered to our home.

Hospice came, both a nurse and social worker, and kept Palliative Care posted on their weekly visits with Carsen and her well-being.  Palliative Care also helped us with paperwork for medical issues, gave us support with a dietitian, and saw Carsen at various check-up appointments.

Here it is 4 years later and Carsen is still thriving, thanks to the Lord, the love and support from her family and some of the terrific medical care given at Akron Children's Hospital.

Dr. Patel is the BEST and continues to care for her multiple heart defects.  He is a brilliant man who truly looks out for Carsen's best interest.  He is protective of her and genuinely wants what is best for her.

We feel that Carsen is in great hands with the doctors that we have encountered.  Her pediatrician, gastroenterologist, vision, endocrinologist, all have steered us in the right direction and are all part of her medical team at Akron Children's Hospital.

The road ahead is still bumpy, and each new day is a challenge, but it is just that....a new day that we get to spend with Carsen.

Today, Carsen is very petite but thriving.  She is in preschool and can walk, finger feed, drink, "dance", climb, clap, and warm the hearts of every person she meets with her smile.  She is a miracle and our little blessing.  Thank you to all who helped contribute to her wonderful life!

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