Sunday, August 08, 2010

Katy’s Story…from the beginning

June 16, 2010                                                                                                     Updated: August 2010

After 6 years of infertility, and several failed IVF cycles. Mike and I were finally pregnant. At our routine 18 week ultrasound instead of finding out if Baby Murphy was a boy or girl, we were informed that our baby had a serious heart defect.

The left side of her heart was only 1/4 of the size it should have been. She was diagnosed with Hypoplastic Left Heart Syndrome. At that point we were given the opportunity to terminate… but for us that was not an option. The alternative, we were told, was a series of heart surgeries to reconstruct her heart. The first surgery being immediately after birth.
Katy was born five weeks early due to my preeclampsia. On December 20th 2007 after a normal, and uneventful delivery, much to everyone’s surprise Miss Kathryn Marie Murphy was born screaming and PINK! After birth (and a few cuddles with mommy) Kate was taken to Children’s Hospital Boston.

The team at Children’s didn’t quite understand why Kate appeared to be doing so well, her "echo" still showed a significantly small left ventricle. Yet, somehow her little heart was keeping up with her body’s blood flow needs. She was a Christmas Miracle in the Cardiac ICU. No one on the floor has ever seen a HLHS baby this healthy. After 10 days of observation, it was decided that no surgery was needed at this point and they let us take our baby home!

At our two week cardiac checkup it was decided that more study was needed. Katy was admitted for a cardiac catheterization, and an MRI. After another 10 days of testing and observation, we were sent home on 3 heart meds, again no restrictions.

Over the last two years Katy has continued to baffle the doctors, because she is doing so well. Her heart meds have kept her healthy. Her diagnosis was changed from Hypoplastic Left Heart, to Restrictive Cardiomyopathy.
The only noticeable symptom Katy shows is that she is tiny and has a difficult time gaining weight, even though she is a great eater and is on a high calorie diet. We estimate she eats 1600 calories a day, and she only weighs 20 pounds. It became a concern when she stopped gaining weight 6 months ago.

As a result of her not gaining weight our cardiologist Dr. Marx, who is GREAT, decided that another Cardiac Catheterization and MRI was needed. The cath showed her pressures to be seven times the normal pressures. After doing well for so long, Katy’s care was turned over to the transplant team

As a result of her failure to thrive, a G tube was placed in August for feeds.  Although it was not a decision I was entirely on board with, it was better than the NG tube. Unfortunetly, even with the high amount of calories we are pushing on her she has not made any significant weight gain.

.Kate was listed as a status 1B on the UNOS Transplant List on July 29th 2010.

To meet Katy you would not believe that she’s a little girl waiting for a new heart. At this time, she is doing clinically well and acting like a happy and normal four year old.  She goes to preschool and dance class. She loves playing with her brother!!

She is our ROCK STAR!!!

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