~Baby Chanelle ~

In 1996 my husband Ralf and I were married. We had a fairy tale wedding and both had great careers. In early 1998, we were surprised to find out that we became pregnant. We had always dreamed of having children, but this was quite a bit earlier than we had planned. Initially we were scared and thought that we were not ready for such a drastic change in our lives. However, during the nine joyful months of pregnancy that followed, we gradually embraced the new life that was ahead and our anticipation of our new bundle of joy grew with each passing day.

Andre was born on December 16, 1998 after twelve tiring hours of labour. Ralf was elated to have witnessed his little ‘champ’ being born naturally and thought I was the toughest new Mom around to have successfully given birth with such courage and patience. Andre was the perfect picture of health, weighing in at 9 lbs. 3 oz. Parenthood really agreed with us and we were on top of the world.

We enjoyed our little guy so much that in 2000, we decided to have another child. Andre was now two years old and we thought this would be the perfect time for him and for us. We had no problems becoming pregnant right away, but unfortunately after a very difficult twelve weeks, I had a miscarriage. This was a very emotional experience for us, but we were determined that our son have a sibling. This setback was not going to stop us.

Two months later I was pregnant again. Once again, I was off to a rough start. At 14 weeks I started bleeding, so naturally I thought that I was having another miscarriage. We pulled through, however, and the pregnancy continued with many challenges. At 32 weeks, the OB measured me to be that of 36 weeks and I was diagnosed with polyhydramnios, a condition where I had too much amniotic fluid. I was referred to a high risk doctor who said that everything would be fine after doing several high level ultrasounds. Despite what the doctors said, I felt like something was wrong! According to the doctors, my biggest risk was if my water broke. With all that fluid, I imagined Niagara Falls if that was to happen. At 37 weeks, I measured 50 in. or the equivalent of 50 weeks pregnant and sure enough, my water broke. We made it to the hospital without any complications, but after 22 hours of non productive labour, the doctor said that the baby was too high up and that I had to have a c-section. I was extremely disappointed that this baby would not be born naturally as Andre had been, but Ralf and I both understood that this was the best decision for both myself and the baby.

After a very routine c-section, Steffen was born and initially everything seemed to be okay. However after seven to eight seconds, the medical team realized that he was not breathing on his own. They immediately intibated him and began attempts to stabilize him. After frantically asking what was going on, I looked into Ralf’s eyes and immediately knew something was wrong. My heart sank as I saw the same terror in his eyes that I was feeling. Steffen was very quickly moved to the NICU and stabilized.

I was efficiently moved to the recovery room after the surgery was complete and Ralf stayed with Steffen in NICU. Ralf mentioned to the pediatrician that Steffen’s ears looked different, kind of small and round. The pediatrician said he was slightly premature and had his own unique little ears. Steffen weighed in at 6 lbs. 4 oz., significantly smaller than his big brother Andre. After reviewing chest x-rays, the pediatrician concluded that Steffen’s nose must be blocked. He said that this could be corrected with routine surgery and there was nothing to be concerned about. The hospital contacted ‘The Hospital for Sick Children’ in Toronto and a transport crew was immediately dispatched.

Steffen was taken to ‘The Hospital for Sick Children’, and all that I was left with was a Polaroid picture of him with tubes and wires sticking out of him. Ralf went with Steffen in the back of the ambulance and called me six hours later. He said that the doctors suspect CHARGE syndrome and that he would be visually and hearing impaired to some extent among other things. They said that he could be deaf and blind. My stomach sank to my feet and I was more scared than I had ever been in my life. Our initial response was ‘this can’t be happening to us’ followed by ‘why us, we haven’t done anything wrong…’ However, as time passed we got over feeling sorry for ourselves and learned that the best we could do for Steffen was to accept him the way he was and help him any way we could. He was released from the hospital after six weeks and was doing incredibly well. There were still many uncertainties relative to the extent of Steffen’s disabilities, but we were given some excellent advice by one of the doctors at Sick Kids. He told us to ‘just take him home and love him.’ So that’s what we did.

The first year with Steffen was difficult but he was a fantastic little guy. We had a lot of help from various therapists that came to our home. We learned a lot more about CHARGE and how it specifically related to Steffen. We also learned how rewarding it was to help a little child who needed more help than the average child. Life was different for us and different was okay.

When Steffen turned one year old, we thought that it would be great to have another child that could help Steffen. We also wanted our older son to have a sibling that he could relate to a little easier. Andre loved Steffen, but he could not play with him the same way he would have been able to if Steffen had no disabilities.  We were scared, however, because we did not know whether or not our next child would have CHARGE or some other disability. We knew that the ‘it will never happen to us’ attitude was unrealistic for us. We talked to several Genetics groups and they said there was no reason that we should have any problems, as CHARGE is a sporadic event that happens one in 15,000 and it was not genetic. They gave us the hope we needed to proceed.

I read a book about “how to have a boy or girl naturally” and thought how great it would be to have a daughter, my own little Princess. I always dreamed of having a sweet little girl. We followed the book’s recommendations for having a girl and after three months, we were pregnant.  I had a great pregnancy, no bleeding, no excess fluid, I felt great. It was once again the perfect textbook pregnancy. We had a high level ultrasound at 18 weeks and the technician confirmed we were having a girl and that everything looked great. We were thrilled, maybe the method in the book worked. However, it did not matter, another boy would be great also. We just wanted the baby to be healthy and happy.

In August 2001 my water broke, I was five days over due and wanted to try natural childbirth. I reached three centimeters and freaked out. I could not bear to have a natural birth, I kept having flashbacks of Steffen’s birth. My labour did not progress very well, so the doctors agreed to give me a c-section. I was relieved, but still very nervous. Rachelle was born 9 pounds, 9 oz. She was a big, beautiful baby girl. She looked perfect. Ralf said “she has nice ears”. I was terrified, but maybe everything could work out okay this time…….or maybe not.

I barely caught a glimpse of Rachelle when the nurses commented that her colour did not appear as pink as they would have liked. She was still kind of blue. “Everything is great Michelle don’t worry she is fine”, the doctor commented. “She is so big and healthy looking, she probably just has fluid in her lungs.” Suddenly, things changed rapidly and we were having flashbacks to Steffen’s birth. I looked into Ralf’s eyes and saw the same terror again, only this time I knew that it was different. Rachelle’s oxygen level was dropping rapidly and the medical team could not stabilize her. She was rushed to the NICU and once again, Hospital for Sick Children in Toronto was contacted.

Ralf was by my side when Rachelle died three hours later. The doctors told us she had a major heart defect called transposition of the great vessels and that they did everything they could to save her. The transport team from TSCH had a helicopter waiting, only to go back without our baby. Little Rachelle hung on as long as she could, but not long enough for her to know what if felt like to be held by her loving Mom and Dad. We were devastated.

The doctors were all baffled. How could something so tragic happen to this family? How could two major abnormalities occur in two successive children? They concluded that the two births were unfortunate unrelated events. Some of the doctors said they had never seen anything like it. Ralf and I were healthy people with no family histories of such problems. We never smoked, didn’t abuse alcohol, didn’t use drugs, were physically fit and ate all the right foods. There were many questions. Nobody had any answers.

What was wrong with us? All our dreams seemed lost. It’s like we had a black cloud over us. How were we possibly going to tell Andre that, once again, we were not coming home with a little sibling that he so looked forward to? At least with Steffen, he eventually came home. Andre had been so strong and understanding in dealing with Steffen’s issues, but this was different…and what about Steffen? We wanted so much to have a little one pushing Steffen along and helping him achieve his milestones. Gone.

The days that followed were the toughest days of our lives. Notifying our friends and family, Rachelle’s funeral, and coming home to an empty baby’s room. There were many tears and many days of not getting out of bed. Ralf had just started a new job with increased responsibility so he eventually had to return to work. However, I could not be left alone with the kids. I was recovering from major surgery on top of the depression that had fully set in. I felt I was heading towards a breakdown. So we decided to hire a live in nanny to help out. She would spend time with the kids and help with the day to day household chores. We found someone who we were all very happy with and she worked out great. This was the first step in putting our lives back together.

In time, I got up and around and started going to the gym. I worked out and lost 50 pounds. I started to feel good about myself again after about ten months. There wasn’t a day that went by that I did not replay those tragic events in my head, but I was more focused on Andre and Steffen than ever. Andre was five years old now and Steffen was doing great. We were all learning American Sign Language so that we could communicate with Steffen. Steffen was not even three years old and he knew more than one hundred signs already.

Ralf and I started to talk about the potential of rolling the dice one last time. Were we nuts? Had we absolutely lost our minds? We weren’t sure ourselves.  We went to THSC and once again had genetic counseling. They said there was no connection to Steffen and Rachelle and their associated problems. They told us that there was almost no possible way that this could happen to us again. We felt like we had heard that before. We were still unsure, but the decision was made for us when we became pregnant by chance again. Our record was not good when we planned the pregnancies, so maybe this one would be okay as Andre’s had been. We had to believe this.  The baby was due March 12, my Birthday!! How perfect. This could either be the best birthday of my life or the worst. I was hoping for the best.

We did not tell anyone for four months and when we finally did tell our family and friends, we had very mixed reactions.  Some of them supported us and told us we were very courageous while others said nothing. Some of them wanted to be happy for us, but just couldn’t help but remember the past two instances. This would be a tough time for our friends and family too.

The nine months while I was pregnant were absolutely terrifying. We opted not to have an amino because the risk of losing the baby would be 1/200 and we did not want to take that risk. Everyone we knew was on pins and needles. We didn’t really talk about me being pregnant, we just went through our daily lives and I got bigger and bigger. This should have been the happiest time of a couple’s life, like it was for us the first time. But it was the most terrifying. We couldn’t help but replay the last two births in our heads over and over and over.

We knew that a natural delivery was completely out of the question, so we scheduled a c-section for March 2, ten days before my birthday and the baby’s due date. The pregnancy had gone very well, but I was paranoid every time something seemed the slightest bit out of the ordinary. Everyone was watching the calendars, nervously anticipating the day. A week before the scheduled date, the doctor changed it to March 1. We decided not to tell anyone about the change in the date so that we could surprise them with good news if everything went okay.

The day arrived. On March 1, 2005, Ralf and I walked into Southlake Hospital in Newmarket at 6:30 a.m.. We had the top O.B. and the top pediatrician in the operating room with us. At one point I closed my eyes and the pediatrician told me he had a really good feeling that everything would be okay. His words were surprisingly very soothing for me and for a moment, I believed the same.  Ralf and I did not say one word throughout the operation.

At 8:39 a.m. weighing 8 pounds 3 oz. Chanelle was born. She was a beautiful, healthy baby girl. She went straight to NICU to undergo initial monitoring just to make sure everything was okay. She was more than okay, she was fantastic!! It was so worth it !!!! Our little girl was here and she was coming home with us.

Today, big brothers Andre and Steffen adore their baby sister. She will learn sign language from day one to communicate with Steffen and she will be a pal for Andre to play with and protect. Our family is now complete. We will never forget Rachelle and we still talk about her almost every day. She is still part of our family, even though she is not with us physically. Appropriately, her middle name is Angel, because we know that she will always watch over us.

Reflecting back, it was a hard journey that I hope most people never experience. However, we have learned a lot along the way and we continue to learn from each other every day. Life is good again. I have my family and friends to thank. But most of all, I am proud of the love and strength that Ralf and I share as a couple.