Tara’s Story
Tara arrived safely on the 8th February 2003, weighing in at a healthy 3.485kg and for 3 days we carried on happily until 3am on day 4 when Tara decided it was time to take Mum and Dad out of their false sense of security and get the nurses into action by turning blue. It was found that our little angel had congenital heart disease and needed to be transferred immediately to Intensive Care at Westmead Children’s Hospital.
Tara and Mummy went by ambulance while Daddy followed behind in the car. Arriving at Westmead in a complete state of shock, and believing that the situation must be a bad dream, we were all seen to by a wonderful team of Cardiac Specialists, Doctors and Nurses. After more x-rays, ultrasounds and blood tests Tara’s condition was diagnosed as Tetralogy of Fallot. Tara was then hooked up to all manner of wires and monitored for 3 days before her first operation at only 6 days old to insert a BT shunt. To the relief of her distressed parents the operation went well.
Dosed up on morphine and hooked up to wires monitoring every function of the body, Tara breathed only with the assistance of a ventilator. Two days after her operation Tara again decided to traumatise her parents by not breathing. It was extremely scary and the thought that we might lose her almost became a reality. The nurses gathered around and resuscitated her. Tara was rejecting the ventilator, ‘get those tubes out of me’ she was telling us. The morphine was turned down gradually so that her brain could kick-start her into breathing. A day later Tara was breathing on her own.
When Tara first came home from hospital, aged 2 weeks, life soon took on the usual new baby in the house routine. Tara was a good and settled baby. This made it easier to cope with Tara’s heart condition. But at age 6 weeks Tara began to scream, she seemed in such agony, nothing we did seemed to comfort her. Tara no longer slept well or for very long, and she wanted to feed constantly. The Doctors reached the conclusion that Tara had colic and because Tara was still breastfeeding mum would have to restrict her diet. The result was no dairy, no mushrooms, and no calcium carbonate supplements (calcium citrate was okay though). When Tara was 4 months old and mums diet had been restricted sufficiently all was well in the house again. Tara was sleeping 12 hours at night and everyone was happy.
Then when Tara was 6 months old and eating a very healthy and varied diet she stopped sleeping through the night. We were back to only 4 to 5 hours sleep a night for mum and dad. Oh no! Why? We think that Tara was not drinking enough milk during the day, but how can you make a baby drink more than they want? We now put it down to the fact that Tara’s oxygen levels had started to drop and she was just too tired to feed properly.The other difficult and stressful thing to deal with during this time was the fact that we weren’t able to let Tara cry for more than 5 minutes. We continued to question this with the Cardiologist because it was sending the whole house mad. Tara learnt that she ruled the house and there was nothing we could do about it. It made it difficult to do anything if Tara was not in the right mood. It made it difficult to settle her to sleep that’s for sure. Tara spent a lot of time sleeping in her pram – we even considered selling the cot at one point. Then finally at 7 months old mum was able to breastfeed Tara to sleep, the only thing that worked, as Tara would not accept any other form of comforting.
Tara battled so many viral infections. Just about every fortnight there was a medical appointment of some sort. Either the heart surgeon or the cardiologist, the paediatrician or the GP, x-rays, ultrasounds, and the usual baby health checks and immunizations. When Tara was 8 months old she started becoming bluer each day so she was kept in overnight for monitoring. While we were in the hospital Tara picked up another viral infection and so we were back in emergency with a high temperature that couldn’t be reduced. She was well again within 2 weeks, just in time to be admitted again for her cardiac catheter. During the catheter the doctors were not surprised by her heart, it was as they expected based on the echoes and x-rays previously taken. However, what did surprise them was the state of Tara’s kidneys. After a number of uncomfortable tests Tara was diagnosed with Duplex Kidneys.
It was a very busy, often distressing and extremely stressful 9 months. Our feelings ranged from anger to sadness, from envy and guilt, to loss of control and isolation, and back to happiness and relief. There were not many days in the first 9 months when I, mum, was not reduced to tears.
Tara was admitted to hospital on Wednesday 19.11.03 in readiness for surgery on the 20.11.03. Once at the hospital the doctors, nurses, the surgeon and the anaesthetist had to see and examine Tara to ensure she was fit to have the surgery. It was a relief to hear that the surgery would proceed because the build up to it was so nerve wrecking.
At 6.30am Tara had an antiseptic bath. At 7.15am the nurses administered a pre-med to make Tara dozy. That’s when it hit. The tears started flowing. The reality of the day was sinking in. Mum and Dad cried, and hugged and kissed their little girl who was oblivious to what was about to happen. Even under the pre-med Tara had a bit of attitude, grabbing at things and trying to chew them, having a little tantrum if it didn’t go her way.
Dad had to wait in the waiting room while mum accompanied Tara to the aesthetic room, donned in surgical gown, hat and shoe covers. Laying Tara down on the bed and watching her struggle against the little face mask until she gave in and went to sleep was the most difficult thing to witness, especially through all the tears. I kissed her on the forehead and told her I’d see her real soon. Mum and Dad then held on to each other and sobbed. Even at this point you wonder if you’re actually going through what you think you are. We still felt in shock even after all this time. Tara was now out of our hands and in the hands of the surgeons, who we had complete faith in. We picked up the pager from PICU and now all we could do was wait. We had Tara’s brother, Kieran, and a few friends and family members with us during the 6 hour wait, and without them the waiting time would have been horrendous. When the surgeon spoke to us at 2pm we were so relieved to hear that everything had gone well.
When we first saw Tara at 3pm we were not as shocked or as upset as we thought we were going to be. Seeing photos of other children after heart surgery helped prepare us and it was so nice to see such a beautiful pink baby. Lips, tongue, fingers and toes had all lost their blue tinge. Even amongst all the tubes and wires Tara looked peaceful, she was dosed up on morphine and other sedatives and doing well. The doctors and nurses were happy with her.
Tara gave us a few concerns during her stay in PICU, such as high temperatures which caused the staff to wonder about kidney failure, she was also very wild, she was strapped to the bed and given extra sedation, she had a horrible sounding cough, and a heart breaking little cry as the morphine was reduced. But day by day she was recovering and the chest drains, ECG monitors, arterial lines, catheters, cannulas, oxygen monitor, ventilator, nasal gastric tube, temperature probe were all slowly removed over the days that followed. On day 7 we were all sent home, relieved and grateful, but a bit nervous.
Tara is now 14 months old, and has developed rapidly since the surgery. I remember the first 2 months after Tara’s surgery as difficult, avoiding people and places to help prevent Tara from getting sick, watching for any little sign that all was not well, not being able to pick her up from under the arms, and of course not wanting her to cry. But this all seems ages ago now. Tara turned 1 in February and is doing all the normal 1 year old stuff, she’s walking, well running actually, she’s cheeky, her sense of humour has really come to the surface, she doesn’t eat enough, or sleep enough, but we love her still. Watching Tara and her funny antics you would never guess that she has a heart condition and has recently had open heart surgery. She is our champion.