Riley, Andrew Christian

[left:8d2f11e53f]http://www.cherubs-cdh.org/Album/new/riley-andrew.jpg[/left:8d2f11e53f]The story of our journey begins in August, 1994 when my husband, Greg, and I discovered that we were expecting our first child. It was such a thrilling time for us. One of our greatest desires in life was to be blessed with children to love, nurture and raise in a happy and loving home. Our joy increased as the size of my pregnant belly grew. We could hardly wait to discover whether our child had "indoor or outdoor plumbing". Finally, when I was 18 weeks pregnant, the day of our ultrasound arrived. It didn't take an expert to point out that we were expecting a boy. He was not modest in the least. However, within minutes, our hearts were shattered as we learned that he was in serious trouble. This just had to be a dream. Nothing could possibly be wrong with OUR child. I remember asking the neonatologist several times, "Now, what is the name of this defect?" He would slowly say each syllable clearly, "Diaphragmatic Hernia". We could never begin to imagine just how familiar that term would become. A "hernia" sounded minor and so easy to fix. Certainly it wasn't as serious as this doctor was building it up to be. That day remains so vivid in my memory, as the doctor sat down with Greg and me, informing us that basically there just wasn't much hope. He told us of three options: 1) abortion; 2) try to carry the baby to full term and hope for enough lung growth to sustain him; or 3) experimental fetal surgery. It seemed to us that this doctor's recommendation at this point, was to abort our child. However, to us, this was not an option to consider. It's amazing to think about how much our life had changed within an hour's time. We went home in shock. I remember going to our bedroom, shutting the door, and just lying in bed all day, crying, praying, and just lying there in disbelief. The next day we began seeking out as much information as possible. We went to the local library and I was able to find a couple of articles on an experimental procedure being performed in San Francisco. I was amazed to read that the Pediatric Surgeons there were repairing Diaphragmatic Hernias in utero. We immediately contacted UCSF to see if we would qualify as candidates for Fetal Surgery. Within a very short time, we were on a plane flying from our home in Orlando all the way to San Francisco to meet with the doctors there and to see if this would even be a possibility for us. We met with the Fetal Treatment team headed up by Dr. Michael Harrison. They informed us that we would be candidates for the surgery. However, they would not be able to perform the full repair on our child due to the fact that his liver was herniated up into his chest. We learned that the umbilical cord is connected with the liver. In earlier cases, the team found that when they attempted to bring the liver down into the abdomen, the umbilical cord would kink, and consequently the child would die. If we decided on the surgery, they would keep the lung fluid from escaping. The lungs would have a chance to grow, due to the expansion of fluid in the lungs. The lung growth could even cause the abdominal organs to move into the abdomen. We flew home to Orlando, knowing in our hearts that this was the right option for us. We wanted to give our son every possible chance for life. We knew that if we didn't have the Fetal Surgery and our son died, we would always regret not having the surgery. We believed that if we had the Fetal Surgery and our child still died, we would have done everything within our power to give this child that we loved a chance. Two and a half weeks later, and 27 weeks pregnant, we were back on a plane, going back to San Francisco. We were ready to start fighting for our son's life. The Fetal Surgery went very well, with no complications. However, the week I spent in the hospital was, by no means, an easy week. I spent a day and a half in complete oblivion while in Intensive Care. The medications used to prevent pre-term labor caused very unpleasant side effects. I developed a mild case of pulmonary edema, which for a short period of time, made it difficult to breathe. One of the medicaitons made my heart race. I also experienced hallucinations and constant hot flashes. It really annoyed me having to wear a fetal monitor 24 hours a day. After leaving the hospital, my husband and I were very fortunate to be able to stay at the Ronald McDonald House in San Francisco. I was ordered to remain on bed rest until the baby was born. Unfortunately, all babies who undergo Fetal Surgery are born prematurely. I was determined to keep this baby in for as long as possible. The room that we stayed in was very small. Looking at the same four walls every day, all day, became very old. I remember on a couple of occasions Greg rolling me eight blocks in a wheelchair to the nearest movie theatre. We were determined to find some excitement! At times, I was so homesick. I must admit it was difficult being without a car, in a strange city, thousands of miles from home. Feelings of excitement soon replaced feelings of loneliness, as they began to see lung growth on the sonograms. Unfortunately, during one of my sonograms, they found that the two layers of the amniotic sac had separated so they had to admit me back into the hospital so that they could keep an eye on the baby and be ready to deliver him, should an emergency occur. Well, on Valentine's Day, Andrew Christian decided that he was ready to face the world. I was placed under General Anesthesia and Andrew was delivered by C-section, eight weeks early. Andrew was truly a fighter! From the very beginning, his course was extremely difficult. i'll never forget the day after he was born, one of the doctor's came in and told us that there wasn't much hope; that he most likely would not make it through the day. They had tried everything, including an experimental procedure, but Andrew had severe Pulmonary Hypertension and there wasn't much more that they could do. Due to the Fetal Surgery, Andrew's lung growth was very significant. He had almost a full right lung and about a quarter of a left lung, but he was having such a difficult time overcoming the Pulmonary Hypertension. The doctors decided to try to place him on ECMO. Andrew weighed only four and a half pounds and the doctors believed that he would most likely be too small. It was a long shot, but it was our only chance. We were told that even if they were able t get Andrew on ECMO that he would only have about a 10% chance to live. Fortunately, they did get Andrew on ECMO, and would we have known just how many more hurdles that we would have to face, I don't know if we could have possibly taken it. Andrew was on ECMO for a week, and we were fortunate that he did not experience any bleeding in his brain. I could write page after page on the many close calls we had with Andrew, and about all that our son had to go through. I specifically remember one occasion being paged by the hospital. They informed us to come to the hospital immediately; that Andrew was experiencing a pulmonary hemorrhage. I'll never forget standing several feet from his bedside, watching all of the doctors and nurses nodding their heads, as if there was just nothing else they could do. I watched as they suctioned blood from his lungs. The pain was unbearable as I watched his little arms and legs tossing about. I felt so powerless. I was his mother. I was supposed to be able to run and pick him up and make everything okay, but I was completely powerless, unable to even stand close beside him. I remember another time, when Andrew coded, during what was supposed to be a simple surgical procedure. When Andrew was about four weeks old, Dr. Harrison and team performed the repair surgery. After the risky procedure, we were informed that Andrew had the largest defect that they had ever seen. His entire left diaphragm was missing. They repaired the defect with a Gortex patch. The doctors stated that without the Fetal Surgery, Andrew would have never had a chance. Over the next several months, we saw Andrew overcome so many hurdles. He underwent eleven various surgeries. We were so proud of him. Andrew was such a joy! He charmed everyone with his big brown eyes and sweet disposition. Even though he was in the hospital, we tried to enjoy every moment with him; rocking him, singing to him, playing lullaby tapes, bathing him, dressing him in colorful socks and hats, and just making sure he knew exactly who Mom and Dad were. When Andrew was four months old they decided to perform an MRI on him to make sure that his brain was okay. It was normal to perform MRI's on babies who had been through as much as Andrew had. Several days later, we sat down with one of the doctors to go over the results. We were not prepared to hear the doctor's next words, "I'm afraid I do not have good news". Greg and I went into total shock as the doctor proceeded to inform us that Andrew had experienced severe brain underdeveopment due to the drastic measures taken along the way to keep him alive. He would most likely never be able to walk or talk. As incredible of a blow as this was, Greg and I made a decision that if Andrew wanted to live, we would do everything possible to give him a life of quality and happiness. As the days went by, we discovered that it was even much worse than we could have ever imagined. We were informed that Andrew would most likely begin having seizures and would not be able to perceive hearing or .sight. He had also developed severe scoliosis, and one doctor believed that there was a possibility of him even having Cerebral Palsy. I cannot begin to describe the pain and anguish we experienced as we went in to see our beautiful little boy, after hearing this news. We had such an overwhelming amount of love for this child. Now, we were faced with a decision. Would we - could we - possibly let him go? We would have loved nothing more than to just bring him home and shower him with love! Somehow, though, we knew in our hearts that the right decision for us was to let him go. After much prayer and oceans of tears, we decided to take him off of the antibiotics, and to decline any further drastic measures. We kept him on oxygen and on Morphine to keep him very comfortable. I cannot think of anything more painful or difficult in life, than letting go after so much fighting, and giving your child permission to die. The wonderful staff allowed us to take Andrew out of the Intensive Care Nursery and into a private hospital room with us. We finally had a chance to be a family. How wonderful it was rocking Andrew in total peace and quiet, with no interruptions, and no beeping and buzzing. We knew we didn't have much time left with Andrew, but we were determined to make this time with him valuable and precious. One day, we bundled him up and took him on his first and only outing; to the beach. I could never count how many stares we received, as we walked down to the sand with an oxygen tank, a morphine pump, a stroller, a car seat, a diaper bag, and a little six pound bundle of cuteness in our arms. This was Andrew's last week with us and his absolute best week. We had never seen him so content and peaceful. It was Friday, June 23rd, when Greg looked at me as he was holding Andrew, and said, "I think this is it Karla." It was almost as if he could just feel his spirit going. I took him in my arms and we told him that we loved him with all of our hearts, and that it was okay for him to go. I sang, "Jesus Loves Me," and Andrew smiled his first smile. Actually he smiled three times, and we truly believe that he was beginning to see Heaven. He then took his last little breath and went to be with Jesus. Our lives are forever changed from knowing a little angel named Andrew Christian Riley. To this day, we have no regrets with the many decisions made along the way. Because of the Fetal Surgery, Andrew was given an incredible chance to live. We would have necer had those four and a half months with him had we done things differently. We spect six months in San Francisco. We are grateful that God has opened our eyes to see beauty and purpose throughout this sorrowful time. I could never bear to think that this six months of our lives meant nothing, that our child was just a mistake of nature. Andrew's life was full of meaning! We choose to rejoice in the blessing of knowing him. Let me say also that, because we are human, we have had our times of questioning. No, it's really not fair this happened. I believe that questioning is a natural part of grief. We have also chosen, however, not to let questions consume our lives, but to move on in life, carrying valuable memories of a wonderful little boy who will always be a special part of us. There may be someone reading this who has recently lost a child due to this terrible defect. I just want you to know that I know what you are going through. I know the loss is tremendous. There is consolation in knowing that our children are completely whole and without pain. They are enjoying pleasures that are too incredible to imagine. If you'll listen with your heart, you will hear your child say, "Thanks Mom, Thanks Dad, for believing in me and for loving me. I want you to know that I'm just fine." If you are carrying a child that has been diagnosed with CDH, I encourage you to begin considering and researching your options right away. Whatever the path you choose, it is going to be a difficult journey. I highly suggest that you obtain information on Fetal Surgery. It is not for everyone, but it is a viable opportunity to consider. My prayers are certainly with you as you face the days to come!



Updated 1998:



It's been a very long time since I've been in contact with you. I feel awful about it! Our lives have seen a great deal of transition lately and we've just been so busy. I know...it's a lousy excuse! I found your web-site today and was just thrilled at how nice it looked. It really overwhelmed me to see the story of our Andrew on the web site. Thank you! It's been a while since I've been "in touch" with my feelings of grief for Andrew. When I came across our story, I cried a "bucket" of tears. We now have a seventeen-month old healthy boy, named Garrett. We're also trying for another baby. There's always a little bit of fear in trying for another child, when you've had one with CDH. But, I just have to place my trust in God. He ultimately has my life in his hands. I hope everything is going well with you and with your son! Please let me know if there's anything I can do. If you ever need me to write a small article on dealing with grief, I'd be happy to. Just let me know.



Written by Andrews mom, Karla Riley (Georgia)
1995, Updated 1998