The baby you see here is my daughter Delaney Hope. She was born on March 27th, 1996. We were the happiest parents in the world. We had a 2 year old son Dillon at the time and having a daughter completed our family. My wife Myra and I had been married for 6 years before having our son and due to problems with the first pregnancy, we had several high level sonograms done with Delaney. Despite the 3 sonograms, the next morning Myra called me at home and said to get right back to the hospital. Our pediatrician came by to check on Delaney and heard a problem with her heart. Sixteen hours after she was born we took her from Baylor Hospital to Children's Hospital of Dallas for a pediatric cardiologist to see what the problem was with her heart. Standing in the doctors office in disbelief, we were being told she had a serious defect with her heart and would need open heart surgery within days. She was moved to the PICU immediately and had to remain on medicine to keep her stable. During that time, we were able to hold her and feed her and I even got to change a diaper. She remained in PICU for 4 days, while they waited for her to get a little stronger and for a surgery spot to open up. She had a very rare heart defect called truncus arteriosis, where the aorta and pulmonary artery form as one (truncus like the trunk of a tree). She also had a hole between the 2 ventricles and an interrupted aortic arch. We were told that all the repairs would take about 6 to 7 hours of surgery and would be very difficult. They would have to freeze her body to slow the supply of oxygen to her brain while they did the surgery. We were very excited when after 4 1/2 hours the surgeon came out of the operating room to tell us the repairs were completed. We thanked god and waited for them to finish the surgery. About an hour later the surgeon came out and told us that she was not coming off the heart-lung machine and they would have to keep her on an ECMO unit. ECMO stands for Extra-Corporeal Membrane Oxygenator and is basically a portable heart-lung machine. It is mainly used for respiratory therapy but the surgeon said it could give her heart a chance to rest and get stronger. During the next 7 days, Delaney went through three more open heart surgeries and remained on ECMO. Easter Sunday came and she seemed to get a little stronger. Although we are Jewish, I took this holy day as a sign. We knew time was running out and I had spent days in prayer. On Monday, the doctors came to us and said that she was not getting any better and they thought we should take her off the ECMO unit and say our goodbyes. It was the hardest day of my life, but we knew the doctors were right. So Monday afternoon, we took her off the ECMO machine and I held her in my arms as she went to heaven. We were surrounded by supportive friends and family and it was such a very sad moment. Her heart beat lasted for about a minute and then stopped and she was gone. Although Delaney stayed with us for only 12 days, her memory will last a lifetime. Never did I imagine our daughter would not come home with us. As the weeks went by, I reached out on the internet and on America Online for support in my grief. It was difficult to talk to friends about our loss and my family could not offer the support i needed. This was in April 1996 and I could not find much support online. As a way to honor my daughters memory, I decided to help start an online support group for other parents who lost children. With the assistance of Judy Divers and Linda (TripL155), who were hosting a widow and widowers group on AOL, I helped to start WWAngels..... a room for parents who were grieving the loss of a child. From our humble beginnings with a group of about 12 regulars, we have grown to over 250 members and have had over 500 people come to us for support and comfort in their time of need. We have an email loop and live chatroom meetings on AOL four times a week. This Walking With Angels support group has become a safe haven for bereaved parents to share their stories, memories, pain, depression, grief, and happiness (yes eventually we do get there too). If you have lost a child of any age, I welcome you to contact me for more information on WWAngels and how to become a member. Just click here to email me....
artiemosk@aol.com
I have also found much more online support in the past two years and here are some links that may help bereaved parents. I also suggest that if you need to talk with other parents who have lost a child, you contact The Compassionate Friends. Chances are they have a support group in your area. TCF Home Page
Click here for our links page...
ArtieMosk's Grief support links
http://members.aol.com/ArtieMosk/page2.html
Click here for our library of bereavement books
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