July 12, 1994 - July 18, 1994
Hypoplastic Left Heart Syndrome
Dear Parents,
Over the painful months of my pregnancy, we prayed for a miracle sadly believing that none had been bestowed upon us. Gratefully, we came to realize that God had given us a miracle, Alex would be born. On July 12, 1994, at 9:04 am, Alex came into this world by a scheduled cesarean section. He weighed 7 lbs. 11 ozs and was 18 inches long with a full head of silky black hair. He was beautiful. We knew our time with Alex would be far too short so we made every effort to celebrate his life while he was with us. We feel blessed to have had six and one-half days with our sweet baby boy.
Knowing ahead, while difficult, allowed us to prepare for Alex. We met with every doctor that would have anything to do with me and/or with Alex during his birth and short life. We researched everything we could about HLHS. Knowledge will give you greater confidence in the decisions that you are making. This is extremely important since doctors, family members, friends, books and/or reference materials will overload you with varying and often conflicting opinions. These varying views combined with the emotional rollercoaster ride that you are on make it difficult to maintain some control over your life and the decisions you are making. You must take time to seek out your own feelings so that you can make choices that you feel you can live with. Whatever you decide will change your lives in a very significant way so it is important that you feel comfortable with your decision. Try not to be convinced of what to do. You must believe that the decisions you are making are the right ones for you, your baby, and your family; founded in love, they cannot be wrong.
We prepared a Wish List for our delivery and care which I have attached for you. We circulated it to our doctors as well as to the hospital nurses, doctors and staff so that everyone would "know" us before we arrived. I believe this effort brought us great compassion and support from everyone involved with us at the hospital.
We made arrangements for Alex to room in with us. Michael was allowed to stay, sleeping each night on a cot. Together, we cared for Alex while the nursing staff offered medical support and unmatched kindness. Our family and friends were given unlimited visitation at the hospital. Our two year old daughter, Jillian, spent a lot of time with Alex. At first we thought we should not involve her for fear of the emotional impact to her as well as to us. It took awhile to realize that it was important for Alex to be held and loved by everyone, especially by us and his sister. In six days, we took 300 pictures and videotaped moments we shared with Alex.
The week passed too quickly. I was ready to go home. We knew that if I was released, the doctors would insist on putting Alex in intensive care which would allow us very limited visitation. We decided to take him home. We arranged for hospice care. They gave us oxygen and pain killers to administer when he began to deteriorate. Hospice also provided tremendou support upon Alex's death.
Michael and I both feel very compelled to insure that only positive things come from our son's life, although the pain and longing often make feeling positive a challenge. In many ways we feel like Alex gave us a message of love and beauty. He showed us how to feel with more depth and emotion, not only for each other, but for others as well. We want to be there for you. Please do not hesitate to contact us.
In friendship,
Alex's Mom
Don't be afraid, for you are not alone. What lies ahead won't be easy, but you will find the strength to endure. I know you find it hard to believe that you are strong enough to get through such great pain and grief, but you are. I know this because on April 8, 1994, 24 weeks into my pregnancy, we were there. Our son, Alex Christian, was diagnosed with Hypoplastic Left Heart Syndrome. Despite the advice of doctors, we chose to continue his life while his kicks nurtured our pain. Later, after much research and many tears, we made the decision not to medically intervene.
Taking him home was something that we never imagined would be possible. We did not think he would be "healthy" enough to leave the hospital. We were also afraid that we would not have the emotional stamina and courage required to care for him or to allow him to die in our home. It was only after his birth that we knew that we wanted to bring him home. It was the best thing for all of us. We held him, sung to him, kissed him, and did everything we could to give him a life filled with love and comfort and death with peace and dignity. Our parents, my brothers and their wives were present to give us love and support and to say good-bye to Alex. His death was peaceful and loving. We had a small funeral. Three weeks later, on July 30, which was Alex's due date, we had a memorial service for all of our friends and family. So many people came. We shared Alex's story and showed them pictures of him. We wanted everyone to acknowledge his life and to understand what he meant to us. As you know, people feel so awkward. Though difficult, it is important to plan for whatever services you may want. There are materials available to aid you. We can share some things we pulled together which we found helpful.
Fran Cava
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