Growing a broken heart
My baby will be whisked away immediately after birth ...
As I lay down in the ultrasound room in March – a sense of anxiety washed over me…
I was 19 weeks pregnant with my second child. My first born was 9 years old and my husband and I had decided to try for another child. It never really crossed our minds until mid-last year, and by December, we were expecting. I anxiously advised the sonographer that I did not want to find out the sex of the baby, and he began the scheduled growth scan.
During the scan, the sonographer was very quiet – he was usually chatty – he began to sigh – he also spent a long time with the colours of in and outflow of blood from the heart. I received the results straight away, however, I was told that the baby was a little small and he wanted to book me in for another scan in four weeks to double check on things. I found my daughters scans from the same gestation, and noticed that she too was around a week behind growth wise, so we weren't too concerned.
As I live in a small town, all scans are completed at the country hospital by the same sonographer – so four weeks later, I attended the hospital again for the check-up ultrasound. The sonographer was again very quiet – he sighed louder and more often – and spent a lot longer checking the heart. I was told that I would need more tests and to wait in Emergency for a doctor to speak to me.
I eventually found out the diagnosis of a heart condition, however, I would have to go to a major hospital with specialists to confirm. Two weeks later, my husband, daughter and I were in Brisbane (1200km from home) and after many ultrasounds, our baby was diagnosed with the heart condition Pulmonary Atresia with VSD – blood is not flowing through a valve in the heart to the lungs as it is absent or closed and there is a significant hole in the heart.
The valve closes after birth and therefore a shunt would have to be inserted to keep this valve open. The Cardiologist would be able not operate until Bubs is over 2kg and therefore would have to be medically stabilised until time comes to operate.
After 6 or so months, Bubs will then have grafts, the shunt removed and a lung valve inserted as well as the VSD (hole in heart) repaired. Throughout the growth of life, Bubs will require operations to replace the valve.
Not only was I given all of this information in one sitting – I was told I had to move closer to the hospital at 36 weeks pregnant to be on the safe side. The hardest decision to make was what we would do with our daughter – to move with me to Ronald McDonald House and attend school at the hospital – or to stay with Sean at home while he works, and attend before and after school care.
After much deliberation and many many discussions, we decided the best for our daughter was to attend school at the hospital. We were very lucky that most of our family and friends lived approximately an hour away from the hospital and will assist in Ellah's care if required at any stage.
Unfortunately, the blows kept coming… Ventricles in the brain were larger than normal, and Bubs was very small for gestational age. These could indicate a chromosomal issue. We managed to cope with the news of the heart condition; however the chromosomal outcome was bleak.
We came home from our first meeting in Brisbane very uneasy about the future of our Baby. I had good minutes and bad minutes. I ran into our glass sliding door where all three of us burst out laughing – this turned into tears and hysterics. Without the comfort of my husband and daughter, I don't know how I would've coped over these last few months.
Was it pregnancy hormones? Was it stress? One minute I would be okay, the next I was yelling, screaming and crying.
I still attended anti-natal appointments at my local hospital and another blow came – I was diagnosed with gestational diabetes. When I was told on the phone by the nurse, I laughed. I guess it was the only coping mechanism left in me! So after a few adjustments to our diet, and a quick lesson on how to check my blood glucose levels, I was back on track – or so we thought! Stress can apparently cause levels to fluctuate and this was occurring for me. As yet, I am not on insulin, however I will be checked again soon.
Since initial diagnosis, I have attended Brisbane two more times. The first time by myself without Sean where I was told of the higher risk indicators of chromosomal issues, that Bubs was a lot smaller than they'd hoped, and the heart operation would not go ahead until Bubs was of a good weight. The chromosomal issues could lead to Bubs only living a few days and there was discussion of palliative care. I came home defeated. I didn't think I would be bringing my baby home.
The second visit was only last week, and Sean was able to attend with me. I had the usual 2-3 hour scans, tests, discussions, meetings and an amniocentesis to decipher if Bubs did have any of the chromosomal issues.
The first good news in approximately three months indicated that Bubs had grown quite well. Both Sean and I were relieved that things were looking up. Two days later, we received the fantastic news that so far, tests had indicated there are no chromosomal issues.
I cannot describe the relief Sean and I had at this point in time. We were preparing for anything and to get along with life as it came – and now life seems a little easier and the weight has been lifted.
There was one scare during some scans – and discussions held whether to keep me down there from now…
Thank goodness I was able to return home. I have another appointment in a week in Brisbane again. This trip will entail more tests – and I have a feeling they are going to make me stay. This week is full of packing and organising just in case!
We have very little assistance from the Government for the fortnightly travel. My airfares are paid for – and Sean's if he is travelling with me, however our daughter is not covered, neither the out of pocket expenses such as to and from airports, parking, and accommodation.
Each trip costs us between $250 and $500 depending if Sean and our daughter come, and does not include food. We have borrowed money to cover costs and have had the thought of selling one car. A long-time friend of mine emailed my mother a couple of months ago, and they are now in the midst of organising a fundraising event.
We are madly scrambling for donations of prizes to hold raffles and auctions, as well as money to assist us with upcoming flights, travel and the ongoing care of our baby.
The past few months have been an absolute emotional rollercoaster. Officially, I have just under 9 weeks to go until I am due on August 24.
It is difficult to come to terms with the fact that my baby will be taken away immediately after birth – I doubt that I will be able to hold him or her; I doubt that I will have the skin on skin contact, and I doubt that I will see my child for a few hours. I will not be able to breastfeed as I wanted; I will not have the closeness as a mother should in the first weeks of life. Our baby will be whisked away and checked, tested, monitored and given many doses of lifesaving medication – likely to be in a humidicrib and fed through a tube until after the first heart operation.
I am slowly coming to accept these terms and I will eventually bring my baby home.
For more info visit our blog at www.growingabrokenheart.wordpress.com or follow Growing a Broken Heart on Facebook.
To help with the fundraising event visit https://www.mycause.com.au/mycause/raise_money/fundraise.php?id=51815