Harry’s Journey

Harry MunroeOn the last Wednesday in September in 2013, our lives changed forever.  We attended our 20 week antenatal scan of our first child and the excitement of seeing our baby quickly turned sour when we were told “there is something wrong with your baby’s heart…it could go either way.”

Following the longest week of our lives, we attended the Foetal Diagnostic Clinic at Monash Hospital where our baby was diagnosed with a very rare Congenital Heart Disease condition called Hypoplastic Left Heart Syndrome. The cardiologist explained to us that the left side of the heart had not fully developed and that our baby would need to undergo three staged surgeries in order to survive.  It almost seemed easier to deal with such devastating news once we had the management plan.  We decided to go ahead with the pregnancy with the hope that he would survive.  Without question, this was the hardest decision we have ever had to make, but we both knew we had to give this baby a chance at life.

My husband, Chris and I, then prepared ourselves in the most practical of ways in the lead up to the birth – we cooked, made accommodation plans, prepared our house for a baby that would come home.  Upon reflection, nothing can actually prepare you for the rollercoaster of emotions that follow once giving birth to a baby, let alone a heart kid.

More regular check-ups and scans followed at Monash Hospital in the lead up to the birth, and at 30 weeks, during monitoring, his heart rate kept dropping and the doctors became very concerned that I was going into labour.  We were informed that he was too premature to operate on and would not survive.  However, when they did another scan, they found him squeezing his umbilical cord until he fainted – the naughty monkey! We have since learnt that you need to watch Harry’s hands – he has also managed to pull out breathing tubes, lines inserted into his veins and his feeding tube countless times!

After sweltering through the hottest week on record at 36 weeks pregnant, I was booked in for an induction at 38 weeks.  After trying to give birth naturally, Harry decided that he was not coming out that way and I was rushed down for an emergency caesarean. Our little baby boy, Harry,  took his first breath and his small heart took its first beat on its own.

Following the birth, the doctors worked tirelessly on Harry for what seemed like an eternity. He was stabilised and quickly transferred up to the NICU.   Due to the caesarean we were separated as a family for three days as Harry was transferred to The Royal Children’s Hospital with his Dad by his side.  I don’t remember much of that time except for the two minutes I spent with Harry as he was wheeled off into the ambulance.  The Monash Health midwifery team made every effort possible to ensure I saw him before he lef.  I can never thank them enough for such kindness.  We “video called” so I could see what my little baby boy looked like. In the days following, our immediate family all came to meet Harry before his surgery.  This was important to us in case we also had to say goodbye.

On Day 3 of Harry’s life he had his first surgery, which was the Norwood operation.  Being such a cheeky little rascal, Harry made sure that thirty odd doctors and nurses knew he was there after throwing a massive medical hissy fit later that night.  Doctors were never far from his side for the next 24 hours.  Two weeks in ICU, infections in his wound and small lung arteries made Harry’s journey a long and at times precarious thirteen weeks away from home. Harry had his second stage surgery at two and half months as he had outgrown his shunt and his small lung arteries where not keeping up with the blood flow to the lungs to oxygenate his blood. We slipped out of The Royal Children’s Hospital quietly exactly thirteen weeks to the hour that Harry had entered the world with such commotion and fan fare.

Chris and I are very lucky to share our lives with a very supportive family and friends who gave us the space we needed and also knew when it was time to sit close and quietly hold us together.  There were many happy times we shared in the hospital, as the three of us were all together, beginning a new life together.  Choruses of “Oh Harry, will you look at that hair” filled his room as he met his extended family, the first cuddles with mum under the watchful eyes of the Rosella ICU staff, and his first bath that everybody heard! Good Friday was spent in the hospital, and it was such a special day for us and Harry.  We made special friendships with other families as well as the gorgeous nurses and doctors who patiently sat and listened to us ask the same questions over and over again, or who chatted with us as we paced the corridors at midnight trying to get him to sleep.

HeartKids was such a huge support whilst we were in hospital.  Tracy, Sherrie and Amy offered an impartial ear, provided support to both Chris and I and were always there with a smile at morning tea. Talking about Harry with someone who had already ‘lived’ the Hypoplastic Left Heart Syndrome journey was so beneficial.

Harry Munroe Family PhotoNow we are home, we are settling back in to normal life.  Some days you feel like you don’t belong in your new environment and returning to the hospital for appointments brings back an odd sense of comfort.  Other days, the hospital is a distant memory and we look at Harry and wonder how a child with so much life and hair could possibly have half of a heart.  What we do know is that he is a very special child who fills our life with love and laughter and we are thankful that he chose us as his parents.

Photos courtesy Janis House Photography

Victoria & Tasmania