Sonia
Written 1995

Hi, I've been on the Heart Kids committee since September last year, so I thought it was about time to introduce myself to you formally. I live in Clovelly Park with my boyfriend, James and a Tenterfield Terrier pup called Sally. My sister and step-brother live in nearby streets, and my mother, Jutta, and step-dad, Hans, live in Belair.

I was born on the 18th of October, 1972 (so that makes me nearly 23 years old!), in Adelaide. Soon after I was born, I was diagnosed with Transposition of the Great Vessels. This means that the Aorta and the Pulmonary Artery are the wrong way around or transposed. Instead of one figure eight circulatory system, there are two parallel systems and oxygenated blood does not get to the body. At three weeks of age I underwent a Cardiac Catheter and a Balloon Septostomy to allow "blue" blood to mix with the oxygenated blood. I underwent another Cardiac Catheter in November, 1973, and was scheduled for surgery in February of the following year.

In February, 1974, five months before my sister was born, a baffle to direct the blood flow to the correct chambers was inserted in my heart. After this major open-heart surgery, I progressed reasonably well. I began primary school in 1977, had another Cardiac Catheter in 1978, and, between 1978 and 1983 was only admitted to hospital once with respiratory problems.

In June, 1983, I was in hospital for my fourth Catheter. I was 10 years old and I remember the girl in the next bed. Her name was Fifi, she was from Mauritius and she couldn't speak any English at all. Two months after this surgery, I became wheezy, and was admitted to hospital overnight. In December of 1983 I was put on diuretics, and referred to the surgeon who would perform open-heart surgery to enlarge obstructed pulmonary veins the following January.

My next restudy was another Catheter (the 5th!) in December 1988. The Cardiologist discussed the possibility of a "banding and switch" procedure, which consists of a series of three major operations with no guarantee of improvement. My files were sent to the hospital in Melbourne where the procedure would be done, but the decision not to go ahead was made because of the experimental nature of the surgery (it was only early days for the "switch" then, especially on a teenager) and because I was reasonably healthy.

Everything went relatively smoothly for a while. I completed Matric. with a passing score of 77/100, and began studying Junior Primary teaching at Sturt College of Advanced Education (now Flinders Uni.) in 1990. In 1991 I met James, and I left home.

In 1992 James and I were working on York Peninsula when I became very ill. I could not lie flat without coughing and spluttering and, after Saturday's not very successful fishing, we returned home. After an awful night's sleep I saw my G.P. who suggested I make an appointment to see my cardiologist if I wasn't better in a few days. Finally I rang mum! She took me to casualty where, after numerous tests, I was diagnosed with congestive heart failure. I was prescribed Digoxin, Lasix, Captopril and Spironolactone and given an appointment for Tuesday, two days later.

Since then I've had low blood pressure a few times but have been generally well. In February of this year I had a Gated Heart Scan. This test involves the use of radioactive isotopes which are injected into the bloodstream while lying under a huge camera.

Everything seems to be working as well as possible at present, my drugs have been reduced to only Digoxin, Lasix and Captopril and I feel okay most days. Recently James and I opened an Exercise Equipment Hire business, which is running quite smoothly now (we even have waiting lists!!). I have also decided to continue on the Heart Kids committee and, having recently bought a computer, I am taking over the production of the bi-monthly newsletter.

Well, that's my story. There are many people I didn't mention that should be in there somewhere. I think you know who you are, so to keep the pages down, THANKYOU EVERYBODY!!

Sonia has written an accurate account of most of her surgical procedures and hospitalizations, however there is another side to her story.

The emotional experience and effect on me and my family of having a Heart Kid has not been mentioned. I feel that all you Heart Kid parents reading Sonia's account can sense the emotional rollercoaster, and know what life was like from one clinical proceeding to another. There were many times when we found ourselves confronted with this intolerable situation of losing her for days on end.

To write about our experiences, especially from a mother's point of view, would take a very large volume or two, but most of us have learnt not to dwell on problems and bad times. It is a relief to share this experience with others. I am grateful for having found Heart Kids. The group has given me wonderful support, and it's activities have become part of our life. Thankyou to Paul Tait (the first committee Heart Kid) for making me feel so welcome a year ago. It is a very important part in Sonia's life, too. How wonderful to have another Heart Kid on the committee. I am proud of you, Sonia!

As well as coping with all the problems of raising an often very ill Heart Kid, I went through all the normal developmental processes that children pass through with Sonia. It is difficult having a Heart Kid baby, toddler, child or teenager. Problems do not become easier, they are just different. Although, when your Heart Kid finally jumps the coop, the empty-nest syndrome seems to hit just a bit harder. Will she be alright? Can he take care of her like I would?

I refer back to what I learnt over many years of struggle, anxiety, tension, unhappiness and depression. Maybe you will find this helpful when in need.

The Calming Response.

Step 1.   Mentally detach from the situation and smile to yourself.
Step 2.   Think to yourself : clear head, calm body.
Step 3.   Take in one slow deep breath.
Step 4.   As you breath out, relax yourself from your head to your feet.

This works particularly well when the "unkown" seems to hang over you like a black cloud and could drop from the heavens without warning.

As you might gather there is no end to this story, except to say enjoy each day as it comes and :


LIFE IS A STRUGGLE, ACCEPT IT.
LIFE IS A CHALLENGE, MEET IT.

Sonia is well at present. No future repair surgery has been scheduled . Sonia may be a suitable candidate for a heart transplant. I expect (I am) feeling some anxiety in this situation, but I'll cope. I won't try to deny or avoid my anxiety, but I also won't focus or dwell on the problem. If it is possible to do something constructive about the problem I'll focus on doing that. If not, I'll focus on doing something else pleasant or constructive for my daughter.

Let's spend quality time together. Best of health to all of you, Jutta Macht.