West, Emma Margaret

[left:7e2e1be119]http://www.cherubs-cdh.org/Album/new/west-emma2.jpg[/left:7e2e1be119]This is the story of our beautiful little girl, Emma. She blessed our lives. My name is Linda, and I am Emma’s mum. Her daddy’s name is Dan. In June 2000, we found out that we were expecting our first child. We were a bit shocked at first because we had only been trying for three months and had expected it to take a little longer, but we were very pleased. After getting a positive home pregnancy test result, we went off to see my GP to have it confirmed. We were told our little baby was due on 11 March 2001.

Things went pretty well, and at 12 weeks I decided to take the option of having a neuchal translucency scan. I was so excited that I would get to see our baby for the first time. It was still hard to believe that I was pregnant; I had been getting a little bit of morning sickness, but never actually had to throw up so was managing that OK. My GP told me that this scan would check for things such as Down syndrome. Off I went for the scan; it was amazing seeing the little baby on the screen, my heart just swelled with love. It was real! But I went from one almighty high to a horrible low with a thump. The radiologist advised that the thickness of the skin at the base of our baby’s neck indicated an increased risk of Down syndrome; my risk went from 1/380 (round about) to 1/188. We were both scared and worried. We were told we should have some invasive tests done to see if the baby did have Down syndrome. We were told that there were two types of tests we could have done, amniocentesis, or chorionic villus sampling with amnio.

My GP recommended we go to talk to an obstetrician for help in making our decision and recommended Dr. Hill to us. We went and saw Dr. Hill, and in our circumstances, he recommended amniocentesis and recommended a doctor to us. We made an appointment for the amnio and then started on the waiting game. It was (or I thought so at the time) the worst 4 weeks of waiting we had ever experienced. At 16 weeks we went and had the amnio done and everything went fine. But a hint of what was to follow was contained in the doctor’s report; it mentioned that it “appeared the stomach was partly in the chest.” We saw this and wondered what it meant, but as no one had mentioned anything to us, it must not have been serious. Weren’t we wrong!

Two days later we got the preliminary results back, and it was good news. So far, it indicated everything was normal, and the baby did not have Down syndrome, but we had to wait another week or so for the final results. We happily went off on our holiday to New Zealand to visit my family feeling fantastic. While we were in New Zealand, we got the final results, which confirmed that our baby did not have Down syndrome; everything with the baby’s chromosomes was normal. It was like a load off our shoulders, and we were looking forward to the rest of the pregnancy.

We were booked in to have a 20-week scan when we got back from our holiday. Our world collapsed when we were informed then that the baby had a diaphragmatic hernia. I have never been so scared. What was this “diaphragmatic hernia”? What did it mean? The obstetrician who did our scan and amnio recommended we go straight to hospital to advise them, which we did. Luckily, a nice nurse was on duty at the antenatal clinic that I attended at the Royal Women’s Hospital. She arranged for a neonatalogist to speak to us about and explain what was wrong. When we were told that we could not underestimate the seriousness of the condition and that our baby could die, we were absolutely stunned. This was not supposed to happen to us; what had we done wrong! The doctor was very good and drew diagrams and explained in as plain a language as he could what would have to happen. As you can imagine, we were full of questions. We were told that the baby would need to be taken from us immediately after it was born, sedated and intubated, and placed in intensive care; when they were happy the baby was stable, they would look at operating. We could expect our baby to be in hospital for 3 to 4 months. We walked out of there in shock.
We were back at hospital the following week to see an obstetrician and find out more. It was the beginning of what seemed like 1,000 visits to hospital. After not liking the first obstetrician we saw, we switched clinics to Dr. Hill’s, the doctor we had seen privately before this diagnosis. We both liked Dr. Hill and were comfortable with him looking after us. We were determined to do everything we could for our little baby. Thankfully, it was around this time I found Cherubs. It answered a lot of questions for me. My way of coping was to find out all I could and be as prepared as I could.

We then began the cycle of monthly appointments, ultrasounds, etc. We had decided not to find out our baby’s sex. I had been diagnosed as having polyhydramnios, common with babies with CDH; otherwise, I was feeling okay, getting bigger, feeling lots of movement. We had a meeting with Dr. Kimble who would be performing the surgery. After being on an emotional roller coaster for a couple of months, he instilled some confidence in us, and we felt better; it was not hopeless. He told us that babies who did well usually did really well, and those who did not do very well, didn’t. It was up to each individual baby.

At 31 weeks, I ended up in hospital. I had been at work and was having lots of what I thought were Braxton Hicks, but realised they were coming a bit thick and fast for that. I rang hospital, and they said, “Come in; we had better have a look at you.” I stayed there for three nights, with two trips to the labour ward, as they thought I was in early labour. I had two steroid shots for the baby’s lungs. Fortunately, my cervix remained long and closed, and they managed to stop the contractions and sent me home. My obstetrician advised I had an irritable uterus due to all the extra fluid, and I would have to take it easy and finish work. We were told the baby would probably come early. We had another couple of trips to hospital, which were false alarms, and our baby’s due date came and went.
The time before Emma’s birth had been tough, but we knew we were in for tougher. I was not very patient before all this, but feel I am a more patient person now. Some things are just beyond our control. We had received lots of support from our families. But I felt some members of the family did not really understand the seriousness of the matter.

I was getting a bit fed up of it all when her due date came and went. I wanted her out! I wanted the next stage to start. I went for my weekly appointment four days before she was due, hoping my doctor would say, “If you have not had it by Monday, come in and we will induce you.” But he checked me out and said it was not safe to be induced yet. I was a bit disappointed but realised there was nothing I could do; the baby would come when it was ready and while I was carrying the baby, I knew he or she was safe. The following week when no baby had arrived, he decided that if I had not gone into labour by Sunday, to come in and he would book me in to be induced. It was a bit scary. We had a date and things were going to start happening!

My mum came over from New Zealand about six weeks before our baby was due (as she was supposed to come early!), and then two weeks before she was due, my sister and father arrived. I am so glad they did; they were there when Emma was born and shared her entire life with us. Danny’s parents came down for her birth as well.

On Sunday evening, I was admitted to hospital and had the gel placed on my cervix. Danny was with me and stayed for a while but we were told that nothing would happen until the next day so he went home. That was about 10:00 p.m. I tried to get some sleep (fat chance!) and about midnight asked for a sleeping tablet. This did the trick, and I got about 4 hours sleep, waking at 2:30 p.m. I started to get small contractions and had a lot of what felt like bad period pain. It was 3:30 p.m. when I was lying on my side that I moved and felt a “pop.” I remembered my mum saying that when she was having my brother she felt a pop before her waters burst. I rolled over and sure enough my waters came gushing out. It was the weirdest feeling. I called the nurse, and she changed my bed, etc. There was no turning back now! About half an hour later, the contractions started to increase in strength and frequency. I rang Danny at 5:00 a.m. asking him to come in. I needed and wanted him with me. At around 6:00 a.m., Danny arrived at hospital with my mum, dad, and sister in tow, all looking a bit bleary-eyed. It was the start of a long day.

About 7:00 a.m. they took me down to the labour ward. I had decided I would have the baby by lunchtime (again WRONG!). I needed pain relief not long after that, so I tried the gas. It did not do much for me, and around 9:00 a.m. I asked for an epidural. At around 12:40 p.m., I was 3-4 cm. dilated. Things were going pretty slowly. I was hooked up to saline, syntocin, and the fetal monitor and was not allowed off the bed. Baby was doing fine. I managed to get a bit of rest in the afternoon, and Danny got to have a snooze on the comfy chair they had in the labour suite at the same time. At 5:40 p.m., I was fully dilated and bubs was in the right position, so the midwife said I would be able to start pushing in an hour or so. I started to push about 7:00 p.m., but after an hour and a half of pushing and getting nowhere, I was exhausted. It had been a long day, and I felt like I was getting nowhere. They’d had to turn my epidural down as my blood pressure dropped. I was starting to get distressed, but bubs was doing ok. I just knew I could not push her out, and I was disappointed with myself. I felt like a wuss, complaining; my back was killing me, and I could not get comfortable. The midwife called the registrar in and she checked me out; they then discovered that she had turned posterior and appeared to be stuck, so they called my obstetrician.

While we were waiting for him, the midwife said I might have to have a caesarian. I was prepared to do whatever they felt was right, but from the start, my doctor had said he wanted me to give birth vaginally. Dr. Hill arrived, checked me out and immediately took charge. He decided on a vacuum extraction, and they would try to turn her. I was immediately calmer and listened to the instructions they were giving me about what I had to do. Once I knew that I was going to have some help, I felt a lot more confident. Twenty minutes later (at 9:39 p.m.), our beautiful little girl came into the world. She was placed on my chest for a brief minute and then whisked off by the midwife to the resuscitation team waiting outside the door. We never really saw her, just her sore little head from where the vacuum had been, but we heard one cry from outside the door, and we both looked at each other, our hearts filled with love. They were happy with the way she responded to the intubation, and she was taken up to the ICN. They brought down photos of her shortly after; she looked just like her dad.

I did not get out of the labour ward till 1:00 a.m. the next morning, as they were very busy. We all went up straight away to the nursery to see her. They arranged for the chaplain to come in, and we baptised her. I got back to the maternity ward at 2:30 a.m. and was put into bed. Danny, my Mum, Dad and sister Megan then left; we were all exhausted. It had been a long day! I have to say that I would not have made it through without my wonderful husband. He was fantastic. They gave me a tablet so I could sleep, and I woke 4 hours later just relieved that they had not come and woken me during the night, so my little girl must still be alive.

She remained stable for the first day, but was on maximum support. She took a couple of turns for the worse, but managed to work her way back again; she was a real fighter. It was hard seeing her lying there. All we wanted to do was to pick her up and run away with her. We sat with her, talked to her, told her how much we loved her and all the things we were going to do with her when she came home; we also read stories to her.

The surgeon came round to see her, but he was not happy with her condition. She was not making any headway. The doctors advised us that she was on maximum support, and she had to improve before surgery could be considered, as she would need more support after the surgery. This was heartbreaking. The Tuesday I was in euphoria--we were parents. It was the most wonderful feeling, but mixed with this horrible fear we would lose her. On the Wednesday, the tears flowed quite often. I could not sleep on the Wednesday night; I woke up in the middle of the night, and my thoughts were filled with Emma. I asked the nurses for some paper and an envelope, and I sat down and wrote her a letter. When I finished the letter, I went to the nursery. I had to see her. They put the letter in her cot. I wanted it to be with her all the time, as we could not be there every minute of the day. I wanted a part of us with her.

On the Thursday morning, I was up and hoping to be discharged. I went up to the nursery and read her a story. Danny arrived just as she took a turn for the worst. Megan, my sister, was there, too. She managed to improve slightly but not up to what she had been. We spent the morning with her and took more photos. At lunchtime, I went back to my room, saw the doctor and was discharged. We had 1,000 things to do. We went to buy a mobile phone so that when we were not at the hospital they could get hold of us at any time. I rang that afternoon and called to see how she was doing. She was still the same, no improvement. I told her nurse that we would be in around 6:30 p.m. – 7:00 p.m., that we were just going to have some dinner.

We got to the hospital about 7:10 p.m. I was walking in when the nurse came towards me. For some reason, I had hurried ahead of the others; they were washing up as was required. I just had to see her, so I went on ahead of them. One look at her face, and I knew that my little girl had gone. They had tried to call us, but we were on our way in. It had happened so quickly; she died just before we got there. I turned and looked at my husband who was about 20 metres behind me, and he knew as well. That moment was the worst we had ever experienced and will be the worst we ever experience. We ran to her. She looked so beautiful, so peaceful.

They took the respirator out, and we were able to hold her for the first time. The staff at the nursery was fantastic. We held her by her cot for a while, and then they took all the other leads out, and I carried her to a special room they had. We held her, kissed her, cuddled her. My parents and my sister did as well. Danny and I gave her a bath and then dressed her in a little outfit I had bought for her. We then held her, kissed her, cuddled her again. During this time we took lots of photos. This time we spent with her was so special; we will never forget it. She was our most beautiful and special daughter.

The hardest thing was leaving her. We went and saw her again the next day and held her again. I had to because I was having trouble believing what had happened. I had to see her again. We laid her to rest after a beautiful service the following week.

Emma will always be with us in our hearts, until we see her again.


Written by Emma's Parents, Linda and Daniel West (Queensland)
2001