In Memoriam - Zach

After a 5 year struggle, I became pregnant with twins. Considering that it was a multiple pregnancy, I was a high risk pregnancy so I was monitored closely by my OB/GYN. I recieved many ultrasounds and I was always told, 'Baby A's heart looks great, but Baby B will not cooperate so I can not get a good view.' There never seemed to be any concern about not getting a good ultrasound picture of his heart. It was always, 'I am sure we will get a better view next time.' At about 20 weeks, I asked to have a level two ultrasound (I heard that I would get GREAT pictures of both the boys) and an appointment was set up. On April 1, 2006 the level two ultrasound was scheduled. I started with one tech and then all the sudden there were two, then three people and then a doctor came in. I started to get nervous and asked what what happening. I was finally told, 'You need to call someone to come be with you. There is something wrong with Baby B's heart.' I immediately called my husband and we were seem by a pediatric cardiologist. She did and echo and told us, 'I am sorry, but one of your son's has a serious heart condition, he has Hypoplastic Left Heart Syndrome.'

As soon as I got home, I called my mother, a nurse at Massachusetts General Hospital, and told her what I was told. She was able to help me find and get in touch with an incredible, well known, doctor at Boston Children's Hospital. The following day I was on the phone talking with the doctor and then a week later, I was at the hospital to meet with him in person. I researched everything I could about what HLHS is and what the prognosis is. My family and I were terrified, but we were going to give Zachary every chance we could.

During a routine OB/GYN appointment at 24 weeks, I was told that my cervix had thinned to zero and I was put on strict bedrest at home. At 27 weeks, it was discovered that I was now 3 centermeters dialated and labor had started. I was admitted to the hospital and spent my first night in Labor and Delivery to stop the contractions. I spent 3 weeks in the hospital and made 2 more trips to Labor and Delivery, willing myself to stop the contractions so that I could give my sons more time to develop and give Zachary a change at surviving. At 30 weeks, I was rushed in for an emergency c-section. My sons were born and Zach was immediately taken to Children's.

At 6 days old, Zachary had his first open heart surgery. He was the second smallest child to ever have the surgery and the smallest to survive. He spent 10 weeks in the hospital before he was able to come home. We were home 3 weeks when we took our first medflight back to Children's because the shunt had clotted off. Zachary underwent stage one surgery again the following morning. We spent a few weeks at the hospital and then we were released home again, but only for a short stay. He was re-admitted for failure to thrive and a feeding tube was put in. We were released again and spent a few weeks home before he became sick and we were re-admitted. His feeding tube was now changed to a feeding tube that went directly into his small intestine instead of the stomach because he was not able to keep anything in his stomach (anything that went in would be thrown up within minutes). We now had another medflight, our second stage of surgery, two cardiac arrests, and many admittances for illness and changing of his GJ-tube (feeding tube).

Of the 16 months and 20 days that my son struggled to survive, he spent a total of 4 months AT HOME, the rest was spent admitted to the hospital. We celebrated their first birthday in a conference room at Children's, their first Christmas in the CICU, their first Halloween in the cath lab and cardiac floor, and their first Easter on the cardiac floor. It was not something that I would wish on anyone, but I would do it all again if it meant that I could have my sweet sweet angel, Zachary, here with me.

On October 13, 2006 Zachary was admitted for the last time to the hospital. He has a virus and the cardiologist thought we should ride it out in the hospital so they could monitor him. We spent one night on the floor before he was moved to the CICU. We ended up intubating him, and placing a central line. I started to get a strange feeling and decided that it was time to talk with Zachary. I knew that his fight was about to end and I wanted him to know that it would be alright. I told him he could stop his fight if he wanted to and that I would miss him and always love him, but that I understood that he was tired and may not want to fight anymore. It was 15 minutes later when the crash cart was at the door to our room. I stood by and watched while my son's heart was shocked 4 times. I told them that that was enough and they were to stop. They gave it one more try and he was gone.

I miss my sweet angel more than I could ever put into words. A day does not go by that I am not thinking of him. I loved him before he was born and I will love him till the day I die. If I had to do it all over again, would I make the same choices for my son? I do not know. He lived a very hard and painful life, but I am thankful for every day that I had him.