This month, we have found another wonderful parent in Sarah Lafrance, who has been willing to share her families’ story, in caring for their son Noah in hospital.
The purpose of the Our Time in Hospital Series, is to let families out there going through these experiences, know that they are not alone. If you’d like to share your story, we’d love to hear from you.
My name is Sarah, and my husband Danny and I have two beautiful boys, Maddox (3) and Noah (1). Noah was born with CHD, congenital heart disease, and had open heart surgery at Westmead Children’s Hospital as a newborn.
When I was 12 weeks pregnant with Noah, we found out during our nuchal translucency scan that Noah was in trouble. He had a thick bubble of fluid not only behind his neck, but all the way down his back, over his head and his stomach. Additionally, he had an extremely high heart rate. We were told this was most likely due to a gender based chromosome abnormality.
A few days later our obstetrician outlined our options: terminate; do genetic testing; do nothing and continue the pregnancy as normal. We decided to have a CVS done at 13 weeks. This is where they take a sample of the placenta in order to test the baby’s chromosomes. All of this testing came back clear, and also told us very early on that we were expecting a boy, who we immediately named Noah.
We were told that since his chromosomes were normal, that the next thing to look for was a heart defect, and this is exactly what we found, at 19 weeks pregnant. I still vividly remember our fetal cardiologist telling us that the left side of our baby’s heart was too small, and that he most likely had hypoplastic left heart syndrome, a condition needing almost immediate surgical intervention at birth, and one where the success rate of the first surgery was 80%…to me, this translated to ‘1 in every 5 babies will die….what if that’s my baby?’.
Again, terminating our pregnancy was the first option given, however we decided to continue. As the pregnancy continued, Noah’s heart continued to grow, and while the left side was still small, he were given hope that his condition might not be as serious as originally thought. Noah was born at Westmead Public Hospital in May 2015, and transferred immediately to the Grace Centre for Newborn Care at the adjacent Westmead Children’s Hospital. After his cardiologist did another echo, and the doctors all discussed his situation, they decided that his left ventricle might be big enough to support him without needing the HLHS surgical intervention.
He was diagnosed with a hypoplastic aortic arch along with an atrial septal defect, left ventricular hypoplasia and abnormal mitral and aortic valves. He underwent his first heart surgery the day after he was born, via thoracotomy (through his back). Unfortunately this surgery was not successful, and the day after, at 2 days old, he went on bypass to have open heart surgery, which thankfully was successful. We were in NICU for 3 weeks as Noah recovered from his surgeries – a time that still amazes me, as we were expecting it to be far longer.
What did you find most difficult at this time?
Honestly, everything. I had just had a baby, and I couldn’t hold him, I spent the night he was born alone in a hospital bed surrounded by the healthy screams of other newborns, but I didn’t have my baby. I was terrified that I would lose him and it completely consumed me. The fear was the most surreal thing I have every experienced. I spent every day of my pregnancy fearing Noah’s death, and this only became more real when he arrived. We also found it difficult to balance our time between Noah and our older son Maddox, who had only just turned 2 at the time. We were so fortunate to have my parents staying with us in Sydney (we relocated there from the South Coast for Noah’s birth) however I was still guilt ridden about the time I was spending away from him.
What would you have found helpful?
The care we received was just amazing, the staff at the hospital were (are) so wonderful. I do think that seeing a psychologist during this time would have helped, to talk through everything that was going on. It was something I pursued on my own when we were home, but having someone to talk to (apart from each other and our family and friends) when things were happening in real time, perhaps would have helped calm my nerves or ease my stress.
What tips would you give to the family in this situation?
Ask questions, ask so many questions. I spent so much time living in fear of every little set back. ‘He’s breathing too fast, there must be something else wrong with his heart?’, ‘His wound looks red, what if it gets infected and he gets sick?’. I internalised a lot of my fear, but if I had asked more questions, I am sure it would have helped.
Cry, let yourself cry as much as you need, it is the best release. Try to connect with other parents going through the same thing. We connected with another couple whose newborn had his bypass on the same day as Noah. Having other people to talk to, have coffee with between pump sessions, to have lunch with, to cry with, who truly understood what we were going through, was comforting. Join support pages… the amount of hope and support I received during and after my pregnancy with Noah from online support groups was amazing.
What one piece of advice would you give to a family who is going through this right now?
Try to ‘go with the flow’, for lack of a better phrase. I found myself getting obsessed about coming home, and as a result, every tiny perceived set back was devastating. I wish I had been more calm and accepting of the timeline of Noah’s recovery.
For anyone who has a child that has been diagnosed with CHD (Congenital Heart Disease) Heartkids in Australia, is a great place to start for support and information. Alternatively, you can contact us here at Cocooned at any time.