Our journey began with a routine ultrasound 12 weeks into in my pregnancy. I was getting good at these as my first child was considered a high risk pregnancy and ultrasounds were a weekly routine. So when a familiar technician became very quiet during the examination I knew something was wrong. He couldn't find a wall in the baby's heart. I asked what that meant but he just told me to go home and call my family doctor.
Little did I know this was just the beginning of our story. There was a long journey ahead of us.
A follow up ultrasound was done at McMaster Children's Hospital in Hamilton. Here we learned our baby had a congenital heart disease called Tetralogy of Fallot, a marker for Down syndrome. We were then sent to Sick Kids Hospital in Toronto where we confirmed our baby did indeed have Tetralogy of Fallot but also an Atrioventricular Septal Defect, another congenital heart disease. This too was a marker for Down syndrome which increased our chances of having a child with DS from 40% to 80%. Next came a whirlwind of blood tests, ultrasounds and meetings with specialists and counsellors and finally, confirmation that our baby girl did indeed have Down Syndrome. She would need open heart surgery shortly after birth and beyond that, our future was unknown.
September 10th my husband and I found ourselves driving two hours to McMaster Children's Hospital. The weather seemed to reflect our fears as the rain came pouring down and thunder clapped. The local ambulance was busy with a multi-car pileup and we were on our own, re-routed through unfamiliar country side, much like the journey we were beginning.
September 11th at 3:12 pm Faith was born. Complications led to an emergency c-section. I awoke hours later to find that Faith had been taken to the NICU but she was doing fine. We didn't know if she would be able to survive on her own but she was managing. My husband had been able to hold her briefly as she was being passed from one nurse to another, but it would be another 24 hours before I would get to see her for the first time. There were so many emotions; concerns and fear and such love for my baby. She had been part of me and now lay there with so many machines and attachments. I just wanted to hold her, but it would have to wait for another day.
September 14th I was discharged without my baby. Faith was on oxygen and her little heart could not handle oral feeds for longer than a couple minutes at time. We were told she would need open heart surgery soon. The doctors were hoping it could wait four to six months but she would have to be monitored closely until then. Faith would stay in the NICU until she was ready. It was hard enough having her down the hall while watching all the other moms come and go from my hospital room with their babies constantly at their side. Now I had to leave mine in the hospital without me.
The social worker had given us paperwork and arranged for us to stay at Ronald McDonald House Charities Hamilton (RMHCH). We had driven past the place many times on our trips to and from the hospital but had no idea what it really was. I just couldn't imagine going home and being two hours away from my baby. We soon learned all about the house just around the corner from the hospital.
RMHCH already knew we were coming and had everything arranged. We were given a quick tour as I still wasn't very mobile from the C-section, and then we were shown to our room. Here was a queen-sized bed that was much more comfortable than any bed I have ever slept on, with lots of pillows. The room had everything including a private bathroom with both shower and a tub. It was much more than I was expecting. This was more than just a place to lay my head.
My husband helped me get organized but then he had to go back home to our two year old daughter Aubrey. I was glad he was going home to be with her but scared of being on my own. I had never gone anywhere alone and was still a little shaky on my feet from the surgery. But I knew this was where I had to be. My baby needed me close by and I needed to continue this journey as a stronger person. This was just the place to start it.
The first couple of days at the house were tough but the help was never ending. As other people saw me struggling the help kept coming. Other fathers were constantly carrying things for me. The staff was willing to help with anything that I needed and the volunteers hugged me when I was at my worst. The house became my home and everyone in it became family. Every night people listened to the updates on my daughter Faith as I listened to theirs. We all shared in small victories and understood one another’s disappointments.
After two surgical procedures in Toronto, Faith had her open heart surgery in January, just days short of four months old. We spent six weeks between her hospital bedside and staying at Ronald McDonald House Charities Toronto. Once again we were in unfamiliar territory, an unfamiliar town. Yet we formed friendships that were bonded through pain and supported through familiar grief. Faith’s recovery was a roller coaster and the memories of almost losing her more than once will always be embedded in our minds.
In February Faith was discharged back to McMaster Children's Hospital, and once again we checked in to Ronald McDonald House Charities Hamilton. My two year old Aubrey said it all when she ran into our new room, jumped on the bed and squealed "I'm home!".
The next step for Faith was one more surgery before hopefully coming home. Unfortunately surgery was delayed six weeks as she fought a virus and was put in isolation. Those six weeks I found myself travelling back and forth from home to Hamilton every weekend on my own. We didn't want to expose Aubrey to the virus and wanted to minimize any chances of spreading this horrible virus to anyone else. I never would have thought I could handle being alone but this was home for now. I was greeted with smiles and words of encouragement as I visited my sick little daughter every weekend. In May we were finally having conversations about Faith coming home. We began training to learn how to care for our eight month old baby.
On May 20th, Faith was finally discharged. We are so very grateful to everyone who has been a part of our journey thus far. I didn't expect to find so many positive things in this experience, but the blessings are many. We have grown stronger as individuals and as a family. We have formed many friendships that were only possible through our stay at the Ronald McDonald Houses. I can't thank them enough and actually look forward to staying there as Faith grows and is monitored closely by her doctors.
Our journey is underway but it's a lot less scary to go through with the support of friends.
Please consider supporting families like ours by making a donation to Ronald McDonald House Charities Hamilton.