Sarah’s Story

Sarah our tiny 34 weeker heart Prem

Sarah our 5 pregnancy but our only child. Three first trimester losses and one seventeen week loss and problems with infertility in between meant we walked into Sarah’s pregnancy with a lot of knowledge we had never hoped to have. To aid conception I did 3 courses of Clomid before falling pregnant. At 6 weeks we had our first ultrasound scan to ensure we had a viable pregnancy before starting a twice-weekly course of HCG injections to boost my natural levels. At 12 weeks we had another scan to gauge the progress of the pregnancy in view of placing a stitch into my cervix to hold it closed. After some debate with our OB that stitch was inserted at 14 weeks into a cervix that had already started opening. We thought then we could just sit back and start enjoying being pregnant but the regular 18 week scan showed our little one small for dates with problems with the cord supplying her nutrients. Lets look again in a month and see how it going. We went back to our OB who had to put me back on track and try and calm some of our fears. The baby could be small but we would see how it was growing in a month.

So with trepidation we again fronted up for another scan at 23 weeks. The news this time was even worse. The baby was still very small for dates but we also discovered a major heart defect. Tetralogy of Fallot was the name we were given, a four-part problem, which could prove fatal to our baby. We were totally devastated. When we arrived home I rang an old friend who had lost her son a number of years before with a heart defect. She came and talked to us and helped us try and put some perspective to what we were going through. The OB was great too, he didn’t know a lot about the problem but would try and get us an appointment to see a specialist at Prince Charles who would be able to explain what was happening.

At 26 weeks we entered a New World that of pediatric heart specialists and echocardiograms, similar to an ultrasound but directed at the heart. After seeing Sarah’s Echo the cardiologist came to us and explained what she thought the baby’s problem was and what would be done about it after she was born. Not if she survived birth like we had been led to believe, A normal birth was possible for us and then she would be transferred to Prince Charles for the cardiologist to have a look at. We were given back our pregnancy that day. And even though we faced a major operation after birth, the future looked a lot brighter.

At 33 weeks everything started going wrong. I developed an incredible pain in my upper stomach area. It hurt to lie down at night and if I got down breathing was so difficult. I spoke on the phone to a hospital midwife and to my OB who both thought it could be to do with the baby sitting under my ribs or muscle problems. Both seemed reasonable and I had no reason to think that it could be anything else. That week we finished our Antenatal classes and thought we would just sit back and wait to see our little one in six weeks. I started packing my hospital bag and getting things together for the big event. But each night it was getting harder and harder to sleep. Breathing was hard and I remember hoping that this feeling wouldn’t go on for too long. I would spend nights surfing on the Internet or sewing clothes for our little one or preparing the nursery, anything but sleeping.

Our comfortable world crashed on the Thursday we went into our 34th week. I was a high-risk pregnancy and as such had seen the OB fortnightly right through our pregnancy. And this Thursday was a normal visit. But I flunked the urine test with four positives. My weight had skyrocketed, up about 10kg in two weeks after gaining very little weight the rest of the pregnancy. When my blood pressure was checked it was extremely high. My OB was worried and admitted me for observation and blood pressure monitoring at least overnight maybe longer. I had a blood test and an ultrasound before being settled into a room. The fetal monitor didn’t want to work properly, so we will never know if it was a true reading when our baby’s heart rate dropped dramatically. Luckily our OB chose that time to walk into the room to tell us he was transferring us to the Royal Women’s for observation. He saw what was happening and hooked me onto oxygen to get extra to the baby while he went and made a number of calls. He returned to tell us that arrangements had been made that when we reached the royal the baby would be delivered by caesarean straight away. I rode all the way in the back of an ambulance watching my Husband following behind. I am not sure then it had sunk in exactly what was going on.

We arrived at the Royal and I was taken straight up to Theatre. There we met our new OB and while I was wheeled inside Glen was left standing at the door. The Pediatrician came up to him and asked him if he was coming in and Glen was prepared to enter. During this time he was talking to the Pediatrician, he was gently briefed about the dangers of what was happening here, the possibility of walking out of the hospital later without his wife or his unborn child or even both, the situation we were in was very serious. Luckily at that time neither of us realized what really was happening. We only released that tonight we would finally become parents.

Meanwhile the Anesthesiologist was having trouble finding veins to first put in a drip then for my spinal. But within a short time of arriving I was wheeled into theatre and our baby was born. We went into that room not knowing what would happen. We had seen the heartbeat drop, we heard the dire warnings at the ultrasounds, and we remember the other pregnancies that hadn’t made it. But the most beautiful thing was when the OB held up our darling little one and she began to cry. No sooner than she was delivered than she was whisked away for the Paed to do his work. Glen was invited to watch as the work was completed on me. Then my little one was wheeled past me and they stopped at my head so I could get a first look. About 5 mins later the nurses brought me back a Polaroid of my little Sarah. Sarah weighed only 2lb 13oz or 1280grams which for a baby 34 weeks is small, the size of a normal 28-29 weeker.

For the next few days it was a toss up who Glen had to worry about more. His wife who was fighting back slowly or his little heart prem in the isolet. Over the next few days the doctors expected my body to bounce back. Each morning the doctor would see me and check me over. Each morning for nearly a fortnight I would have a blood test done. But my blood wasn’t returning to normal, I was still retaining fluid and even diuretics couldn’t shift it. My legs by the end of the day looked like tree trunks, no ankles, and no knee just solid hard leg. In the nursery’s I would have to sit with my feet raised and even then be the end of the day they would be so painful. The only way the doctors pulled my body through was to give me a blood transfusion. Which in itself was a worry adding more fluid to an already overloaded system. But it was the turning point in my recovery. After 13 days I was allowed to go home. It was my GP who raised the fact that I had HELLP when he received the copy of the blood test taken the day Sarah was born and he rang to talk to me quite worried about me only to be told I had already had the baby. When quizzed the physician said yes that was the problem, no one could tell me why my pregnancy went so wrong or even if would happen again.

While I was recovering slowly, Sarah was doing well in the ICN. Glen saw her the first night and a number of times in the first day and he kept me informed on what was happening. She was put onto a ventilator at birth but didn’t really need it and 18 hours later it was removed. She started being fed at about the same time. She had a number of drips in the major one was a drug called Prostaglandin. This is a pregnancy hormone that she was given right up till she had her first heart surgery to keep her Ductus Arterious open. Over the next few days she lost all drips and a central line was placed to keep the Prostaglandin going. My first visit to see her was a bout 26 hours after she was born when I was wheeled Bed and all into the nursery. She was so tiny and it seemed so unreal. There were buzzers and beeps going on everywhere. But she was our darling daughter. Late night trips became the thing after that. When I couldn’t sleep I would get a orderly who would wheel me across to the nursery’s (I wasn’t allowed to walk any distance for 10 days after she was born) to spend some time with my baby. It was during one of these late night visits I received the greatest boost. Sarah was having a sponge bath and weigh in and was very upset about being moved. One nurse was holding her while the other changed the bedding and when Sarah wouldn’t settle turned to me and said, ‘Here mum you hold her.’ It was like Sarah knew who was now holding her because she settled instantly. It was such a great moment that unfortunately Glen didn’t get to share.

We started attending the PIPA coffee mornings each Tuesday and it introduced us to a lot of the mums we were traveling with. I remember sitting in a crowded room sharing stories and gaining strength from each other. Glen & I knew exactly what was happening with our little one. She kept going forward, slowly gaining weight and getting stronger each day. We knew that when she reached the magical 2Kilo mark we would be transferred to Prince Charles and a shunt would be inserted to replace the Ductus Arterious. As the weeks went past her oxygen levels started to fall and the doctor started her on Cot oxygen, he was not sure if it would help her levels but we knew it wasn’t hurting her. Her only other problem was when the Central Line tissued up and got infected. But it was replaced immediately. Sarah was always a little actress. Mum couldn’t handle being around when they changed the line so we went home. Rang a couple of hours later and Sarah had settled back down. She had a good night and morning until Mum and Dad walk in then it was time to winge. Trying to tell us what the doctor had done to her we thought.

During the six weeks we spent at the royal we started trying to get Sarah to breastfeed. I had been expressing regularly since she was born with the hope of being able to feed her. So each day we would have her out of the crib with an oxygen cone nearby trying to help her get the idea. Sarah got to like the cuddles not so much the feeding and got upset if they didn’t happen. During this time one of the nurses gave her a bottle to try and she took to that much quicker, so we thought oh well if that is the way we could get her home, so be it.

We had all along been given a two-kilo goal in weight for the surgeon to do her surgery, and she made that in 5 1/2 weeks. The Monday was a holiday and we went in on Tuesday to the hospital not knowing what the day would eventually hold. We went to the PIPA meeting and came back to Sarah to look at doing trying a breast-feed. While everything was being organized Dr D came in and told us that he had just spoken to Prince Charles and if they could get transport organized Sarah would have her surgery that afternoon. Our rollercoaster plunged suddenly. I just broke down. I wasn’t ready for this, she was too small, We knew this was coming but to now suddenly be given it was such a shock. I sat and stared at my little one and cried my heart out. Everyone was trying to convince me this was a good thing, it would be all right. But this was my darling and she was facing major surgery today. Well it did happen, a central shunt was placed and the Patent Ductus was closed by open-heart surgery that afternoon. Sarah breezed through the surgery and the recovery. Three days later she was moved out of the high dependency ward into a normal ward, we gave her her first bath and lost all her monitors. That was a bit scary, living with monitors for 6 weeks you begin to depend on them telling you what is happening to your child, but we soon learnt that without them we could cuddle and take Sarah around with us.

We still tried to get Sarah to breastfeed but it just wasn’t working, but she was doing really well on the bottle, and it looked like we might be taking her home soon. But Sarah wasn’t ready for home, she gave up drinking and went back to tube feed and we ended up back at the Royal for another week and then transferred to Caboolture for another week and a half. At Caboolture we tried again to get Sarah to be able to Breastfeed but it didn’t happen, so 10 weeks after she was born we took our little one home. She ended up being bottle-fed mum’s milk and because she always had growth issues that milk was fortified up till her first birthday.

Today Sarah is a happy, healthy little girl. She had another open-heart surgery at 18 months when the surgeon did what he could to repair her defect. She faces further surgery but hopefully not until her teenage years. Sarah was born with a possible Chromosomal problem that has affected her along the midline of her body and because of these problems she was late to walk and at 4 is still delayed in fine and gross motor development. Her speech is severely delayed but we hope one day she will talk to us. It has been a long hard road but when she comes to you for a hug and a kiss I think it was all worth it.

6 ½ year update.

Sarah has just finished her first year of school and amazes us at what she has achieved. We have discovered part of the midline in her body affected was the middle of her brain (the corpus callosum) so for her everything is harder as the brain tries to communicate from one side to the other. She is currently works with a special education unit in our local school and in 18 months has just achieved so much. Talking happened around her 5th birthday and once she started it was like a dam burst and the words she had struggled so long with came tumbling out. At 5 ½ she finally ditched the pull up nappies and toilet trained overnight. She is still behind her peers in a lot of things but I think she has managed to teach the kids in her class a valuable lesson, of dealing with someone who isn’t quite the same as themselves. She is very social and loves to interact with her peers. We are so proud of her and what she has taught us.