Sara’s Story

All parents want the best for their children and I am no different however, for Sara we have just a little extra worry and concern. It all started at the 20 week scan.  I had only just got over morning sickness and was hoping that the coming months of pregnancy would be filled with excitement and joy. It was quite the opposite.

My husband, Peter and I had taken our 18month old Elliot to the scan as well; we felt it would be a nice experience for us to see the baby together. We entered the room with excitement; I was aching to see the baby’s development and to hear that they had all their fingers and toes!

Unfortunately Elliot became quite upset to see me lying on the bed with the sonographer scanning my bump so we decided it would be better to remove him to the waiting room and Peter went too. The next half hour went very slowly and it became increasingly obvious that there was something wrong with the baby. I remember the sonographer looking at her heart, then her face and back to her heart over and over. Peter tells me that he had come to the same conclusion in the waiting room as he could see a doctor and two others discussing our scan in another room. Peter was asked to re-enter the room and that is when the sonographer broke the news…

”Your daughter has Congenital Heart Disease (CHD).” I don’t remember much of what was said after that just something about a hole and possible Down’s syndrome and an amniocenteses and termination choices. Nothing of what I expected or wanted to hear!

For some reason I felt I had to keep it together so I held back the tears until I got to the car. I am not sure how I drove the short distance home but I am lucky to have one of my best friends living in my street so I stopped at her place and she embraced me and let me cry.

The next few weeks were a scary and confusing time. It was as if I were in a bubble, it was hard to go to work, to talk to friends and to stay strong for our son Elliot. When I had the amniocentesis we saw our baby girl reach out and try to touch the needle as it entered my womb.  I couldn’t help think that our baby girl must be quite clever to be able to do this in utero (I could be accused of being biased though!)  This cemented the notion that this baby was not going anywhere; we were just going to have to help her through whatever it was she would have to endure.

The next few weeks were a waiting game and finally we received the news that Sara was healthy and did not have any other abnormalities. What a relief it was for us! We were sent to the Woman’s and Children’s hospital where we met a Cardiologist for the first time, who did more scans and talked us through her condition. Sara has a non-complicated Atrioventricular septal defect (AVSD) and a leak in her mitral valve. We were told that she would need open-heart surgery to correct this within 4 to 6 months of her birth and a lot of other information about complications and medications.

It was all such a worry and throughout the pregnancy I felt such a weight on my shoulders. We had such a difficult time with our first son’s health too (another story all together) and were far too familiar with doctors and medical procedures. All I wanted was to have a ‘normal’ experience of a newborn.

I had a planned C-section for Sara’s birth but 2 weeks before the date a routine scan showed Sara didn’t have much fluid around her and our obstetrician admitted me into hospital for bed rest. A huge amount of emotion weighed me down in those two weeks and I had plenty of time to think about the excitement of the birth of our baby girl and the fear I felt at not knowing if she would even be able to breath on her own.

Finally the time came for her birth, I was wheeled down to theatre and prepped for the operation. As Sara was lifted out of my belly she grabbed the umbilical cord so tightly that the obstetrician had to prize her fingers open! A memory that now makes me laugh, as it is just one example of how determined and strong she really is.

Sara had to visit the cardiologist in her first week for an Echocardiogram and some other tests. The doctor had some great news for us. The bottom hole in her heart had grown some extra tissue making the hole slightly smaller so her symptoms would be less. We brought our gorgeous girl home and began to get to know her, she was an amazing sleeper and so happy too.

We visit the cardiologist on a regular basis and to this date Sara remains well and healthy so her surgery has been pushed back. She sometimes goes quite blue if cold or sick and we notice she is sometimes more out of breath than her big brother but she has not yet required any medication or intervention.

So my wish came true; I had the opportunity to experience and enjoy my baby girl just like most other parents, with all the highs and lows of having a new baby and a toddler.

Last year a visit to the cardiologist revealed that Sara’s leak was worsening slightly so the doctor advised that her operation would occur in the not too distant future. Sara is about to turn two and we have been waiting for this day with both pride for our little girls amazing ability to soldier on even with a heart double the size of a normal 2 year old (all that extra work it does to pump the blood around her little body!)  and with a nervous tension at the prospect of surgery. It won’t be long till we will fly to Melbourne for Sara to be admitted to the Royal Children’s Hospital where she will have her AVSD corrected.

I try my best to be positive and each time we go to the Women’s and Children’s Hospital to see her cardiologist I see other very ill children in the waiting room and I am reminded of how fortunate we are that Sara has remained relatively healthy to this point.

There is a part of my own heart however, that aches for the pain that my baby girl will have to endure and the thought of open-heart surgery, well I just can’t think about it!

The month of February brings Valentine’s Day, a time when we see the symbol of the heart everywhere so Heartkids Australia is using this month to create awareness for children who suffer from Congenital Heart Disease. HeartKids Australia is a not for profit organisation that offers support to children and their families who are suffering with CHD. Each year approximately 2,000 children are born in Australia with a heart defect, and although Sara is very fortunate, every week, more than four children die from CHD. There is no cure for congenital heart disease and little is known about the disease and its causes. If you would like to hear more stories or would like to help by raising awareness or making a donation please take a look at www.heartkids.org.au.