Sarah, January 2003

All the kids, April 2002

Sarah was born 2 weeks early on the 3rd October 2000, our fourth and much wanted child. We knew from 18 weeks gestation that there may be a problem with Sarah's heart, and this was confirmed at 20 weeks when we were told the best-case scenario would be surgery, worst case, not compatible with life. At 21 weeks we met our cardiologist, when he told us that our baby was compatible with life, and that her heart defects could be corrected with surgery.

So Sarah was born on a Tuesday night at 10pm. A paediatrician was present, and as she was born strong (7lbs 2oz) and breathing well, I was able to give her a cuddle virtually straight away. Sarah was transferred to our children's hospital within a couple of hours of birth to be monitored. The next morning, once my tubes were removed (I nearly had to have a caesarean) Graeme picked me up and we went over to the children's hospital where I was to stay for the duration of Sarah's stay. On the Thursday Sarah had a cardiac catheter, and it was decided that she needed to have two shunts as she was born with two totally separate pulmonary arteries. The surgeon was going to try and do both shunts at once, but ended up doing the first on the Saturday afternoon, and the next on the Sunday morning. Sarah did well and was out of ICU by Monday evening. On the Tuesday, being one week old, she had her first tube and breast feed. By Saturday morning the doctors were very happy with her, she was breast feeding well, so we were allowed home overnight, but had to come back on the Sunday for a weigh in and check. On the Sunday morning Sarah had lost about 10grams in weight, but we were discharged.

Sarah thrived and did all the normal things, except took a bit longer to walk than normal. She was a chubby-cheeked, happy little girl, who was not the typical looking heart baby. Sarah loved dancing to Hi-5 and the Wiggles, playing Barbie dolls, going on the swings, and being pushed around really fast in a toy box by her brothers. She also loved to brush my hair while I read bed time stories.

Sarah was scheduled to have the first stage of the Fontan and join her pulmonary arteries in May 2002. We received a phone call from our PC with the exciting news that he had done the first video conference with Sydney, and had used Sarah's case. The surgeon in Sydney, said that he could do a biventricular repair on Sarah's heart, and to cancel the May surgery, and he would do a full repair all at once when she had gained a bit more weight, possibly the end of 2002, or early 2003.

As it worked out we booked into Westmead Children's Hospital for surgery on 19th March 2003. We had the pre-op tests done on Friday the 14th, then had the weekend to ourselves in Sydney. We took the advice of a heart mum and went to Toronga Park Zoo, where we had a wonderful day. A visitor to the zoo was taking photos of Sarah, she wasn't just cute to us! On the Monday Sarah came down with a fever. After a couple of frantic dashes to the hospital it was decided to postpone her surgery until the following Wednesday. Sarah didn't get much better, and she wasn't eating well, not sleeping well, and was very constipated! The doctors suggested we go home and reschedule for around 6 weeks when she was fully recovered. While at the airport in Sydney she was so excited to see other children, and when we got home, she had all her stuffed animals around her and was saying "my toys, my toys" (I did take a limited number over there but it is not the same as the full collection at home).

The next surgery was scheduled for the 22nd of May, and we were able to leave Perth on Tuesday evening, arriving in our motel room around midnight, then went to the hospital the next day (Wednesday) around 3pm, and the surgery was first thing on the Thursday. This way Sarah did not have to be out of her home environment longer than was necessary. We had to repeat the chest x-ray, ECG and blood tests, but that was done virtually straight after admission. While we were going through the admission details Sarah was sitting on my knee, saying "poor mummy, mummy go to hospital" we did explain as best we could to our little girl that the doctor was going to fix her heart!

That evening, the surgeon came in and went through what he was going to do the next morning. He told us the risks, that 1 in 30 don't make it, and I don't know if it was because I knew this time the surgery was going to happen and was very worried, but after that talk, I just couldn't stop crying. Poor Sarah was saying "mummy cry, poor mummy". Even though there is a risk, we did assume that our strong little girl would make it.

Sarah had not slept well the previous night in the motel, and was not keen on sleeping in her hospital bed on the Wednesday night either. Probably that she was having so much fun with the 7 year old boy in the bed opposite, didn't help either, they belly laughed, played and giggled non stop all afternoon and evening. She ended up sleeping next to me on the very comfortable sofa bed until she fell asleep exhausted. I told Sarah her favourite story about a tiny tiny baby. We were woken at 6am for Sarah to have a bath. While in the bath I took some photos of her unscarred chest, getting her to lift her arms to show the full effect in one of the photos (her shunts were done through her back). When she was dressed in the hospital pajamas, and had her hair braided I took her last photo, and boy did she look exhausted and blue in that one.

I handed her over to the anaesthetist at 8am, and the next we saw of our little girl, was 5pm that afternoon, after 8 hours of surgery. The surgeon was pleased with the surgery, the only problem being she was on bypass longer than he hoped (132 minutes instead of 60, 80 minutes tops). We sat with her for some time, then rang family anxiously waiting in Perth to tell them the good news that she had come out of surgery. That was my greatest fear, getting her off the operating table, I was convinced once off the table she would be maximum of 2 days in ICU and then we would be home within 2 weeks of leaving.

Sarah had some problems that night with fever, irregular heartbeat, but we were constantly assured that it was all to be expected. Exactly 12 hours after surgery, she was having problems with her blood pressure. At 7am the next morning Sarah had her first cardiac arrest, the doctors and nurses worked on her for 15 minutes and then she was back with us. The head nurse was then discussing brain damage with us, I just looked at her blankly - the thought of my beautiful bright girl with such a clever brain being brain damaged was just unimaginable. A couple of minutes after 9am Sarah's heart stopped again. They worked on her for one hour, but she was gone. I told the head doctor to get all the tubes out of her so I could hold her, and he replied that he couldn't because she had died within 24 hours of surgery, they had to be left in place, and that the coroner would have to investigate and an autopsy performed. They did however cut and plug the tubes, and we got to hold her for the next 5 hours, until we had to hand her over to the coroner. The police escorted us to the coroners van, I was carrying Sarah. I felt like running away with Sarah in my arms, it was all so surreal. Because Sarah died on a Friday, the autopsy could not be performed until the Monday. We could not leave her in Sydney, she was so close to us and so clingy, so we waited until she was ready on the Monday and brought her home that night. We saw Sarah every day except for that Monday when she had the autopsy, I think this helped us a lot.

The only regrets I have is that on the Monday before we left for Sydney she was wearing a beautiful dress and dancing to Hi-5 (one of her favourite past times), I was thinking about getting out the video camera, but as I still had a lot of things to do in preparation for the trip, I didn't. I also wish that I had a family portrait taken, I had some beautiful photos done of all the kids the previous year, but they had changed so much in that time period. Luckily though, I have heaps of photos of her, and more of Sarah and I together, than of myself and my other children (I think this is because she was a permanent attachment to my hip!)

We have so many happy stories and memories of Sarah, and my children are constantly coming out with the funny things she used to say. Sarah has had such an effect on so many people, it constantly amazes us.