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We found out we were pregnant while on vacation, visiting my husband’s family. We were so happy that we were having our second baby. A few months later we went for our 19 week ultrasound and we got the news that would change our lives forever. We learned our baby had hypoplastic left heart syndrome (HLHS). I immediately burst into tears, before the technician could even explain what that meant. I knew the disorder. I had seen my own patients pass away from this illness. Being a pediatric cardiac nurse, I thought only the worst. I had seen the worst – I thought this was a death sentence. My husband knew we had been told something serious, but at the time didn’t fully know what it meant. We cried the whole way home and the rest of the day. At this point we were completely brokenhearted.
A few days later we went for a more detailed ultrasound at the maternal fetal center at the Foothills Hospital in Calgary and the doctors confirmed the diagnosis. We also learned we were having a girl. Our heads and hearts were spinning with fear, as we tried to understand the unfairness of it all and to try and make decisions about what to do next. We were given our “options”, if we continued the pregnancy we had to decide if and what we wanted for treatment, or we could do nothing – this way the baby wouldn’t be put through the difficult surgeries and recovery but would surely pass away after few days or weeks.
The doctors have no precise idea how long a baby can survive without treatment. Surgery is the only option to try and fix the heart, and it is never a perfect fix. So much can go wrong. The first two surgeries are the riskiest we were told. For us ending the pregnancy was not an option. Ultimately we chose to do the surgeries. We didn’t want to give up on our baby before she was born. We decided to accept this challenge and show our baby that she was wanted and she was loved – even if it meant for a few minutes, hours, days, months or years - whatever we are given. We loved her so much already.
The pregnancy progressed. I went off work early to accommodate the seemingly endless amount of ultrasound appointments and also because I was incredibly stressed. I had nightmares, about the hospital most often. We were definitely on an emotional rollercoaster, not knowing exactly how sick our baby would be or even what to expect. Even the doctors had no idea of what to expect, and acknowledged that they would only really know how severe her heart defect is or how strong she is after her birth.
We travelled to Edmonton for few days to meet with the specialists who would take care of our baby after her birth and to put together a plan for her delivery and care. The whole visit made the situation suddenly more real and more stressful. I prayed every night, begging God to help heal Marie’s heart. I prayed for it to go away – but it did not. Time went by quickly and soon we moved to Edmonton. It was the end of March. The team wanted us there around 38 weeks. We stayed at the Ronald Macdonald house in Edmonton, which was one of the best decisions we made. The staff and families were an incredible support to us and pulled us out of some dark times. While in Edmonton the plan was for my husband’s mother to come from France to help us with our older daughter who had just turned two. She was planned to arrive April 6th.
For one reason or another I had put off packing my hospital bag, perhaps I was still in a bit of denial. The very early hours of April first – around 2:45 am I started to have some incredibly sharp pains. I didn’t think much of it at first because we were due in 10 days, but within minutes I couldn’t stand the pain any longer. We quickly called our friend who had agreed to take care of our oldest in case of a “surprise” early arrival. She rushed to the house to take care of our daughter while we rushed to the hospital.
We arrived at the Royal Alexandra hospital in Edmonton around 3:30 am on April 1st 2015. We were admitted right away. The delivery went more or less smoothly. Marie Eloise was born at 7:15 am, and was quickly taken to the case room as she didn’t immediately cry and was a bit blue. After what seemed like a life time she was brought to me. I could finally hold her in my arms. She was even able to nurse for 15 minutes! She was absolutely beautiful and perfect, we were in love. We were able to spend about 30-40 minutes with her before the nurse tearfully took her from us. She was transported across town to the Stollery Children’s Hospital NICU to be in close proximity to the whole cardiac team. After making sure I was comfortable, my husband left to be with Marie and I waited (impatiently) for my discharge.
It took the team a while to get Marie’s central lines placed in the NICU. My husband was unable to see her while they worked. She needed these lines for the medications that would keep her PDA open since she only had one ventricle to circulate her blood. I was discharged that morning and rushed to be by her side. I desperately needed to see her, my only goal was to be with her. Marie did well the first few days in NICU. We visited her as much as we could. It felt very strange not to take her home, but we knew she was in the best care possible.
Marie had several ultrasounds that first week and was closely watched by a team of neonatologists, cardiac surgeons, dieticians, etc. It was decided by the team on Easter Sunday that she would have her first corrective surgery – the Norwood, on Monday April 6th as the first case of the day. Dr. Rebeyka would perform the surgery and would be her primary surgeon moving forward. We were relived but also nervous as to how the procedure would go.
The day of the surgery we arrived early to hold our baby and spend as much time as possible with her before the big procedure. We cried and told her we loved her. We held her and kissed her not knowing how this day would end. We had so much fear and uncertainty – it was all so surreal. We had faith in the doctors, but we still feared the worst. We walked with her and the team to the big doors of the operating area and then we watched her disappear behind the closed doors. We wanted so badly to hold her and tell her everything would be alright. Then for several hours – we waited.
The surgeon first came out to tell us the surgery had gone well but he had to go back and revised her aorta. This meant more time on the bypass machine. She had already spent 90 minutes on the machine. The surgeon told us they should be finished soon maybe in 2 hours. We waited and waited on pins and needles. Finally three hours later she emerged from the operating room. We looked at our little girl - hooked up to dozens of lines, machines beeping - her color pale. The team told us they would call us into the PCICU (Pediatric Cardiac Intensive Care Unit) when she would be ready. We waited nervously for at least another hour before the cardiac team allowed us to come in.
The team was still working on her so we stayed back. Soon the tone of the main anesthetist became frustrated. We heard her call for medications, and more people began to arrive. Soon someone asked for a crash cart and paged Marie’s surgeon, who appeared in mere seconds. Our hearts began to beat quickly – we felt out of place and feared the worst. My husband and I escaped through a back door in tears and ended up in the family waiting room. Crying. Devastated. Had we made a mistake? How could we have made our baby suffer like this? Was she alive?
Soon several of the doctors and a social worker appeared in the door of the waiting room. They asked us to come into the family meeting room. We feared the worst. They told us the space around Marie’s heart had filled with blood and her heart couldn’t properly squeeze – it had stopped; however they were able to get it pumping again. They had to re-open her and to suction the blood out. We cried. She was alive – we could breathe again. We were allowed back in and kissed her telling her how much we loved her.
Later this day, we went home quickly to retrieve some belongings and ended up sleeping at the hospital in the special parent room so we could be near her if there were any surprises. The team watched her closely for the next few days. Her chest bone stayed open to allow the swelling to go down. The plan was to wire her sternum closed three days later.
Marie did well the next few days. We spent as much time as possible next to her. On April 9th 2015 – my birthday, the surgeons closed her sternum. That evening we felt she was stable enough that we went out for dinner as a family.
Marie was eventually transferred back to NICU and she did well the following days even though the doctors soon discovered a chylothorax. We were transferred back to Calgary on April 16th and were discharged home on May 12th the day after mother’s day.
The summer passed and we were very cautious about who we visited with that summer and managed to stay healthy. Marie had a cardiac catheter at the end of July in Edmonton to check a narrowing on her aortic arch in preparation for her Glenn procedure. The procedure went well and we went home after 3 days.
Marie had her Glenn procedure on September 2nd 2015. She did very well following the surgery and we went back home in Calgary on the 10th of September. We were home about a week when we started to notice Marie wasn’t tolerating her feeds. She was vomiting a lot. By the end of the second week, we came in to see our cardiologist in clinic for a check-up and quick echo of her heart – it was September 25th. We hadn’t slept that night because of her vomiting. During that appointment we discovered her oxygen saturations were around 57% (her normal being 72-85%). She was quickly put on oxygen and then admitted to the PICU. Her chylothorax had come back. We were crushed. The cardiologist told us she would need a chest tube emergently as soon as we got to the PICU. With a heavy heart I handed our baby to the respiratory therapist. I feared she wouldn’t come home with us very soon.
Marie went through a lot of ups and downs in the PICU. She fought through 6 chest tubes! Some would only last days others lasted a week. She was on morphine almost continuously and was not able to feed by mouth and had all her nutrition by IV. After about a month we were sent up to Edmonton for a cardiac catheter to close some collaterals that had formed. By now it was November. Because Marie’s chylothorax was not improving the doctors were also talking about a possible ligation of the duct that was leaking.
During the cardiac cath the doctors inserted a few devices to close off the collaterals she had formed (bypassing her Glenn). They hoped it would help her adjust to the change from the Glenn surgery a bit more. Marie had a rough time coming out of her cath this time. She had an arrhythmia that gave a good scare to the staff in the “ICE room”. So we were moved to the PCICU. Thankfully it was only for a short while and we were moved to the unit after about a day. We ended up staying in Edmonton for 3 weeks.
At the end of November her chest tube suddenly stopped draining! Her chest xrays looked wonderful. So they decided to pull her chest tube and close her. We were over the moon! Soon after, we were sent back to Calgary. Early December we worked on her feeds and weaned down her morphine. And on December 14th we were discharged home. Just in time for Christmas. We were ecstatic! Our baby would celebrate her first Christmas at home! We felt pure joy as we made our way home that day. The following weeks and even over the holiday were a bit rough during her morphine wean but we felt so blessed to be together as a family. It was the best gift!
Over the following months Marie slowly got stronger. One by one we went down on her medications. We changed her from a specialized chylothorax formula to breast milk. We weaned her oxygen. We took part in the radio-thon to help raise funds for hospital equipment for the Alberta Children’s Hospital in Calgary. We even had a big celebration to mark Marie’s first birthday – which meant so much to us as a family; being home, with those who love us and being well. It also marked the journey we had gone through as a family. We felt so much gratitude to everyone who had been with us along the way, families of heart babies, friends, doctors, cardiologists.
The love we have received in the last year has been astounding - and has greatly inspired us. It has taught us what is really important in this life and made us value one another more. It has made us aware of the sacrifice of families that have come before us and were not so lucky. We hope to have more birthdays in the future and hope we can help inspire other families with similar challenges.