Twin to Twin Transfusion Syndrome Australia Inc.
A
Member Group of the Australian Multiple Birth Association
Hayley Madison and Caitlyn Michelle (28 July 2002)
Mark and I have two beautiful boys Ryan 10 (from a previous marriage) and Adam 2. We had decided to try for another baby. I had begun bleeding and cramping during the initial weeks of our pregnancy, and had convinced ourselves that we were losing our baby. After an ultrasound we were told we were going to have twins. After the initial shock of “OH MY GOD!” we were ecstatic. Our pregnancy had progressed beautifully, with 4 weekly ultrasounds initially, then 3 weekly. It seemed that I was constantly at the doctors, the hospital or having ultrasounds! Both our girls were healthy and growing at the same rate. We had no indication at all that there was any problem. Then our roller coaster ride began.
On Monday we went to the doctors around lunchtime, and everything appeared to be going OK. Then when the doctor did the ultrasound I knew that something was wrong. He was there for ages, when normally only has a 2 minute look to check both heartbeats. After a while he said that he was a bit concerned about Caitlyn, and that we needed to go have a scan at the hospital. Their machine was much better and would pick up things that his didn’t. At this point we were a little worried but not panicking. So we made our way to the hospital, with Adam in tow. After a few minutes of being scanned, the sonographer said that he had to agree with our doctor, and that the baby had died. Well Mark and I just stared at him, not believing what we had heard. He then realised that we hadn’t been told, and had a serious case of foot in mouth. Mark and I just held each other while he rang our doctor to come straight to the hospital. Some nurses came and took Adam so that Mark and I could talk to the doctor, and he organised to see the head NeoNatal Specialist at King Edward in Perth. We had to make our own way to Perth and check straight into hospital so they could check on the progress of Hayley, and make sure that she wasn’t suffering as well.
The trip to Perth was surreal. Neither of us saying too much, lots of tears, and a general feeling of disbelief. Maybe they had made a mistake, this couldn’t be happening to us. I had done everything right - hadn’t I. We got to King Edward Memorial Hospital around 7pm and checked straight in. They were expecting us, but weren’t too sure why we were there. The doctor usually gives the patient a letter explaining the circumstances, but ours had faxed it through to the specialist. So, I had to explain to the midwife what was going on. We spent until the following Thursday in hospital, where they did lots of tests to see how Hayley was coping. Luckily she was thriving, so they decided it was best if she could stay inside for at least another week to give her the best chance when she was born. So we had then planned that we would try to go for between 1 and 2 weeks to try to make sure that nothing happened to Hayley, with daily visits to the hospital for monitoring.
Saturday night I noticed some blood when I went to the toilet, so I thought that something might be happening, but wasn’t too sure. I woke Sunday morning with a few little cramps etc (like period pains) and thought that it could be labour, but I still wasn’t sure because it didn’t really hurt, and were really irregular. So we went and watched Ryan play soccer Sunday morning. By the time we got home to the hotel, I knew that something was going on. We went straight to the hospital and I was well and truly in labour about 6 cm dilated. That was at around lunchtime. We were then moved to a delivery suite, and met two of the most wonderful midwives on earth. They were compassionate and understanding, and made what was a traumatic experience beautiful. When my body was ready to deliver, I wasn’t. Emotionally I was finding it very difficult to say goodbye to the girls. One of the midwives came over and asked me if I was ready, and that I needed to take a moment, and talk to the girls and say goodbye to Caitlyn and hello to Hayley. After this it was all go. Caitlyn was born first at 4.05pm, Mark watched her being born, cut the cord and Mark and I had a hold before it was time to go again. Hayley was born at 4.16pm and we had a chance to hold both girls. Unfortunately I had lost a lot of blood, and the placentas wouldn’t come out, so I had to go off to theatre to manually remove the placentas and do some handy work with a needle and thread. I had a 2nd degree tear and lost around a litre of blood. Mark went to the special nursery with Hayley to look after her. Because she was born 6 weeks early they had to monitor her very closely. Our very brave little girl was perfect. She didn’t need any extra help, and breathed on her own straight away. I believe that she has the strength and courage of two babies. Caitlyn is alive within her.
Because I lost so much blood I was very anaemic. Hayley was born with too many red blood cells, so her blood was really thick, and she was very red when she was born. I wasn’t able to spend too much time with Hayley the first 2 days, because everytime I went to see her I almost fainted. Hayley continued to thrive, not requiring oxygen. She was jaundiced so spent 24hours in the humidity crib. By day 3 I was able to start feeding her, and Hayley never looked back. We went from Special Nursery 1, to the Satellite Nursery and into our room within a couple of days. They were initially saying that she was going to have to spend about 2-3 weeks in hospital, but in the end she came home with us within a week.
On the Tuesday we asked that Caitlyn be brought to our room so that we could begin to say goodbye. They dressed her in a lovely little pink outfit and we were able to spend the morning with her. We took lots of photos and video of our precious little angel. As hard as it was it was lovely to be able to hold her. I think that it was really important for Mark and I to do this. It really helped to see what we were grieving over.
I wanted to be home before Caitlyn’s funeral so that I could be with Mark and Adam. So we left hospital on Sunday. Adam was glad not to have to go back and forward to the hospital anymore, and we had a midwife coming to visit us at the hotel.
The service for Caitlyn was on Tuesday, and it was going to be a really hard day. I hope that it is something that I never have to go through again. Saying goodbye to a child is not supposed to happen. We had a very small service at the hospital chapel, with basically only family and close friends there. We wanted it to be a very private ceremony. Although we knew that other people would have liked to be there and that their thoughts were with us, it was important to make the service very private. We had a couple of lovely poems and verses. We had a ‘Gifts of Love’ ceremony at the service, where we asked people to bring something to give to Caitlyn, just as they would if she was healthy. It didn’t have to be anything big, it could be as simple as a blessing. Our family and friends amazed us with their love. We had some lovely poems and verses written. Some people even wrote letters and shared photos. We are planning on giving them to Hayley when she is older. It may help her understand how important Caitlyn was to all of us, and how much her life and death affected us all. We got to hold Caitlyn again before she was put into the casket, and we got some photos holding both girls, and a photo with the boys as well. This was really important to both Mark and I. After holding her we both felt a huge amount of strength and love that we were able to get through the day. It almost felt like she was there with us telling us that it was OK to be sad and that she would always be with us. From there we went to the cemetery to say our last goodbyes. We had balloons that we released. It was beautiful as well as sad.
We are planning on having a memorial at Karrakata cemetery in Perth. They have a fabulous section called the Butterfly Garden. They have many ways to commemorate little angels like ours, and we have chosen a Butterfly Twig to celebrate her life.
We have been very lucky that Hayley is progressing so well. She truly does have the strength of two. Our goal now is to watch Hayley’s progress to make sure she reaches those ‘milestones’. Our doctor has told us that Hayley has an increased risk of neurological damage, so she needs to be monitored very closely.
We are cherishing every moment with her, from the sleepless nights to the funny faces of contentment she pulls after a feed. She truly is a special gift.
Lana
(c) 2004 TTTS Australia Inc.