My husband David and I are profoundly sorry that you have come in search of information here, because that means you are facing a difficult road. Just know that you are not alone…and that you’ve come to the right place. Alexandra’s House is a wonderful haven for families and babies facing difficult challenges.
Everyone’s story is unique, as each precious life is. David and I just want to provide you with some information and knowledge that was helpful to us.
After two heart-breaking miscarriages and a diagnosis of Factor V Leiden, David and I were thrilled to discover that we were pregnant for a third time. However, at 20 weeks during a Level II sonogram, our son Chase Hutton was diagnosed with CDH (congenital diaphragmatic hernia) and Trisomy 18. After another 12 challenging and wonderful weeks, Chase unfortunately died and was stillborn on June 22, 2004. We know joy and heartache all too well.
What We Learned
• Every life, no matter how brief, is a blessing. Our son Chase was an absolute gift, and we continue each day to learn more of how his life has touched the lives of others and our life. As you are reading this, he is touching your life. Someone told me that David and I had been specially chosen to carry him, a child with a terminal prognosis, and we truly believe that we were. We are parents, even if we didn’t hold our child while he was alive. If you deny the child’s life, then you are denying a blessing.
• You do the best you can. Each mother, each father, each family has to face this life-changing experience the best they can. You will do what is right foryour child the only way that you know how. Don’t make instant decisions though…think things through. The first thing our specialist suggested was, “Have you thought of termination?” He didn’t immediately offer other alternatives; we had to say, “No, we are going to have this child.” Then, he gave us supportive information, including a brochure for Alexandra’s House.
• Get educated! We were warned not to go out on the internet and read about CDH or Trisomy 18, but we found that it is easier to face your fears. I will warn you; there are many pictures that are very difficult to view. There is also a great deal of wonderful information. Look for websites devoted to disorders like CDH or Trisomy. There are also parents willing to share their knowledge and their total support.
• Ask questions. Based on our reading from websites, we were able to ask the perinatologist very specific questions about the quality of life for Chase, risks to the mother’s health, statistics about the baby’s condition, and questions about care in the hospital, birth plans, and delivery. Ask every question you can and don’t worry that what you might ask is “dumb.” There’s power and comfort in knowledge.
• Hope and pray for the best. There are miracles every day, and doctors do make mistakes. David and I read the facts about Chase’s CDH and Trisomy 18. Then, we did our best to enjoy and be hopeful in our pregnancy. We smiled with every kick and prayed for strength. God had a different plan for Chase, but David and I do not regret one minute or one decision that we made.
• People want to be kind and thoughtful. That’s what I have to keep telling myself. Most people just don’t know what to say and have never experienced what you are going through. In their desire to reach out to you, they may say something that really hurts. Their intention was good…just remember that and try to forgive them.
• Give yourself time and reach out to others. Whether it’s time to let the diagnosis of your baby’s condition sink in or time to face other people about your experience, give yourself the time that you need. Facing this sadness trying to regain some joy in your pregnancy, or even planning a baby’s possible funeral, …all of this takes time. Find your support system. David and I were blessed to have incredible family and friends. We also found Alexandra’s House. You don’t have to go through this alone.
David and I are no experts. We are just two parents who have lost our baby son and wanted to share some of our journey and lessons with you. We do know that you can survive this experience and be stronger for having met the challenge. The journey that you will take is all your own. Remember that Alexandra’s House is here for you.
David and Briday Ware