Wednesday, May 13, 2015

May 13 - Dear Nicholas Sparks (Guest Blogger Susie Barbee)

Dear Mr. Sparks,

She was born September 27, 2001 and went to heaven November 3, 2001. We knew she had CDH when I was about 20 weeks pregnant. We received a lot of help and guidance from Madeline Bracken's parents. She is also a Cherub.

I was a parent of three boys. I always wanted a girl. I had 12 year old, 9 year old, and 1 year old boys. The older boys were from a previous marriage. When Chloe was born they were 13, 10 and 2. We had a hard time getting pregnant with Trent our 2 year old. But as soon as we thought about trying again I got pregnant. We thought it was a Godsend.

When we found out she was sick we had no idea what to expect. We were sent to every specialist. We were told that Riley Hospital for Children in Indianapolis, the town we live in, had a 70% success rate. They had a great ECMO program. As soon as she was born, via c-section due to having 3 others before, they took her straight to the children's hospital. She was 7lbs 11oz and 3 weeks early. I was diabetic so she was pretty big.

That night she crashed. I was in another hospital and was going crazy because I couldn't be there. They put her on ECMO. I got to go to the hospital two times the next day and she was doing well. The following day I left and went to the Ronald McDonald house so I could take the shuttle since I couldn't drive. My husband was going between the hospital, the other boys and work.

To make a long story short, she did great on ECMO, but as soon as they tried to take her off she crashed. She had her CDH surgery and all went well. She had a partial left lung and a whole right. They put everything back and it went well. But every time they tried to remove her from ECMO she crashed. She was the only baby in Riley Hospital that was put back on ECMO in the neck who survived.

Finally, after 24 days on ECMO, they figured out the CDH caused a coarctation of the aorta. She wasn't getting blood flow. They took her to surgery and did open heart surgery and replaced the narrowed aorta with a donor tissue. She did well. She did very well after that and they started lowering the ventilator. They decided to take her off the ECMO. She did well after a few days but then she wouldn't ventilate. They did another surgery to clean the right lung because she became so supportive to the ECMO.

Finally after 24 days on ECMO and three 3 surgeries her heart rate would start dropping. You couldn't even touch her. It was so heart breaking. Her little body was like a doll, stiff. She quit trying to cry and didn't open her little eyes. She was nicknamed ECMO Barbee. Our last name is Barbee.

We decided to take her off life support when the ventilator was on full speed and every time you got near her heart rate would drop. With all the crashes she had the risk of brain damage - not to mention she was not ventilating. We knew it was time. She fought a losing battle. I still feel if they had found the aorta issue earlier it would have made a difference, but they couldn't see it because of the cannulas from the ECMO. If she could have gotten off the ECMO earlier she would have been able to get her lungs stronger.

I just want parents to know that CDH can cause other problems. When the heart is displaced and goes back the arteries can narrow. I am sure her case has brought more attention to the doctors at Riley. My older son had surgery there a few years later and I ran into a nurse that was so very good to us and we became close. She said after that they had a big number of babies coming in with CDH and that the 70% rate went down. She went to another unit to work; she couldn't stand the heartbreak of the babies dying. In the 37 days we were there, there were 3 other babies come in. So 4 in 37 days. We live in Indiana and the other babies were from Indiana also. Two from Indianapolis, including Chloe, one from Terre Haute and another from a small town in southern Indiana. Madaline Bracken is also from Indianapolis.

We sent our baby girl to heaven on November 3, 2001. I tried to have another baby after talking to genetic specialists, but I couldn't get pregnant again. After 3 months of fertility treatments and being almost 39 I found out I was a full blown diabetic and I was going to be a grandma. My oldest son was going to be a daddy. He was 16. I decided to quit the fertility treatments and let it be in God's hands. February 2004 I had a grandson. That June, right before my 40th birthday, I decided it was time to accept my destiny. I got my tubes done and had Novasure treatment.

I have 3 great boys and a beautiful grandson who will be 2 in February. Chloe is always with us. I have her pictures, poems and angels all over my house. I think she is happy. God sent her to us for a reason!!

Chloe's mom, Susie Barbee (Indiana)

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