Little Hearts

Patrick

My son, Patrick, was born November 29, 2005 with Hypoplastic Left Heart Syndrome, heterotaxy syndrome, malrotation of the intestines, and asplenia. He was a patient at Johns Hopkins Children's Center and only had come home for two weeks of his short life. He had a total of 10 surgeries that included five heart surgeries, a hand surgery, two stomach surgeries, one surgery to repair a paralyzed diaphragm, and one tracheotomy. Patrick was a wonderful little boy and he fought so hard. Patrick spent so much time between Hopkins and Mt. Washington Pediatric Hospital because of the severity of his heart defect.

Around July of 2007, he became sick and I decided to take a leave of absence from work. I did not realize this at the time but being with my son for that full month would mean more to me than I ever would know. Patrick had his fifth heart surgery shortly before July of 2007 and then everything turned for the worst. Surgeons had paralyzed Patrick's diaphragm muscle while doing the fifth surgery, requiring a tracheotomy. Patrick's right ventricle had been doing the job for the undeveloped left ventricle and it became weak. Medicines were helping Parick's heart squeeze harder but there was still question about his heart muscle. The doctors decided to see if Patrick could have a heart transplant and the results of that were devastating. Patrick was not a candidate for a heart because his heart had so badly damaged his kidneys and liver that a transplant would make him sicker. So we decided to wait it out because we knew the ultimate fate of our son. on August 17th, my wife and I were called to Johns Hopkins to discuss Patrick's care. I never knew that this would be the last day with my son. We were expecting it, but it moved on us so fast. Patrick was lying lifeless and he wasn't even smiling or looking at his daddy (which was unusual) so I decided to let him go to heaven.

I am a member of Little Hearts and I do not know why I waited so long to share my story with them. I think the pain was too much to bare. But now since he has been gone a year, and considering how hard he fought, I would like him to be honored with the chance to be in the memorial section. I do not think my son is any different than these other sick children, but I do think that he overcame 10 surgeries and that is very brave. I am 25 years old and have never been through one surgery. Thank you for your time.

Story by Patrick's dad, Patrick - Maryland

4/21/2011
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