Amie-Lee & Emily
My Beautiful Babies
Amie-Lee and Emily Two Little Hearts Together My partner Anthony and I felt it was the right time to try for a baby. I went off of the pill in June 2001, I have regular periods with no troubles. I was 28 and I don't smoke or take drugs, I am fit and healthy. I have two older children Luke 25.1.90 and Renae 11.6.94 their pregnancies and births went well with no complications. I took it for granted that this pregnancy will be just as uncomplicated. On September 14th 2001 we found out I was pregnant, we were thrilled. By the time I was 8weeks pregnant I was showing, I was terribly sick with morning sickness and extremely tired. October 19th 2001- 9 weeks pregnant we went for an ultrasound to check our dates, I was showing well, yet loosing weight from being so ill. The sonographer said to us "There is your baby's heart beating and there is your other baby !! TWINS !! " She said "they are fraternal, technically safer" Their little hearts were beating well. We both thought we were so clever and lucky. Pure excitement. We were all so thilled and instantly were talking planning and imagining what our life was goign to be like with twins ! I hoped that our twins would be identical and I did wish for them to be girls. At 12weeks I had given up work from being so sick, I felt so awful and I was certainly showing. I was now weighing (64kg ) less than before I was pregnant. I went to the Hospital for the first clinic appointment. I was a public patient, they gave us a multiple birth association pamphlet and a having twins pamphlet, to read. At 13weeksI had a nuchal fold ultrasound test, from that the clinic doctor said my babies were identical. This was such a fantastic ultrasound, we could see them so clearly and it was just amazing to see two babies in my tummy. I was told to come back in 6weeks, I did think that was strange, I assumed that by having twins you'd be seen more regularly. By 14weeks I was feeling better, not vomiting as much and had put on weight. By 16weeks I could feel my babies move and I was quite big. From here until the 19-week check I got even bigger, breathless and uncomfortable. I thought it was all only because I was carrying twins, from what I had read and been told I had no reason to think otherwise. We planned and planned and had started getting our babies matching things. It was so cute and so special. 28th December 2001- 19weeks we went for the routine ultrasound. We were so excited and really wanted to find out the sex of our babies. I had a feeling they were girls. I got quite faint from lying on my back to have the ultrasound done. The sonographer kept going in and out of the room to check the sizes. She told us that "one was a girl but could not see the other one very well. As they are identical twins the other is obviously a girl." She eventually got another sonographer and they told us that they "think our twins have Twin to Twin Transfusion Syndrome. It is very rare and they do not know enough about it. They would not survive if born now, technically they'd be a miscarriage. You could loose one or both, here is a box of tissues" and they put us in a room to wait for another doctor. One of them said "it's not a death sentence" We waited for ages and eventually a doctor saw to us, they still did not give us any information about TTTS, but said I could come back on Monday (3 days away) for a procedure called an amnio reduction. They also said to me " If you want to take up a bed, we could probably admit you." So we left, we figured it must be safe enough or they wouldn't send us home. I was nervous, scared and had no idea of what we were facing. By the next morning we were so scared and worried, that we rang the hospital to see if we could come back. To get more information and so we could understand and to check on our babies. They said "We couldn't admit you because you're under 20weeks, if anything went wrong it would be a miscarriage." Anthony hung up and rang the Adelaide Women's and Children's Hospital. 29th December 2001W.C.H. we went to the Emergency Department and luckily got to see Dr. Arnez Bardel. she understood TTTS and took it seriously. She told us all she could about the disease the options, risks and complications. It happens in identical twins as they share a placenta, the blood flow is shunted from one baby to the other. It can be life threatening for both babies, the donor baby can become anaemic and die and the recipient baby can die from heart failure, because of the extra blood. I had gotten big from all the extra amniotic fluid in my recipient baby's sac. My donor baby had hardly any amniotic fluid (stuck twin). Dr Bardel recommended an amnio reduction straight away. She removed 1.25ltrs of fluid from my recipient twin. It took about 3.5 hrs and I had another bad fainting spell. It was awful. There are risks with the amnio, but it seemed the only way to give our babies a chance. I was kept in for a couple nights and our babies were monitored. I felt a huge relief of pressure straight away from the fluid being removed and I could feel my twins moving much better. I had 2 more ultrasound's over the next 2 days, our recipient baby still had more fluid but now our donor baby was gaining fluid, she could move around better now. We named our babies, our recipient baby Amie-Lee Ann and our donor baby Emily Arnez. We named Emily Arnez after Dr Arnez Bardel because she gave both of our girls a chance at life and I know in my heart she saved Emily and gave her a chance. We had to just wait and see whether the fluid in Amie-Lee's sac would build back up. Our tiny babies are too young to survive yet; I desperately need to get them to at least 24weeks. The next 24hrs are crucial. Luckily there were no complications from the amnio. 1st January 2002 I was discharged and will be treated at W.C.H. now, we feel a kind of safety in their hands. It was still hard to find information on TTTS; I had many twin books yet still there was not much information on the disease. Our baby's futures were still very uncertain. I needed to know all I could. So my Mum searched the Internet and found the Fetal MD TTTS Message board. There we found our main source of information and learnt of the miracle babies that have beaten TTTS. We found out that there is hope. There had also been a story in the Advertiser around the same time, about 26wk old twins being born at WCH that had TTTS. I contacted the mother and she advised me to contact Dr. Chris Wilkinson at W.C.H. To go onto bed rest, drink Ensure protein drinks and get on the Internet for the best information on TTTS. None of this information was easy to come by. We had to look and search hard for it. There is no Australian TTTS Support. This is an awful feeling to be so powerless and useless. Not being able to find information to help understand this diagnosis, makes you feel that you are in more of a desperate situation. We chose to go on complete bed rest and take the protein drinks. I was only recommended to take it easy by the doctors. 20weeks I have another ultrasound, our recipient twin still has a lot of fluid, but now our donor has more than before. This is a good sign. I have been doing lots of research; the TTTS Message board has been invaluable. I now have a list of questions to ask the doctors and I am able to understand what the doctor is talking about better. 8th January 2002We meet Chris Wilkinson, we asked for him, he is very good and explains the disease and options to us. I have another amnio reduction, he removes 1.25ltrs. of fluid, it only takes 1hr.this time. We are at stage 1 mild TTTS The separating membrane can be seen now and both babies have a more equal amount of fluid each. Amie-Lee still has more than Emily does though. Both of their hearts, bladders and kidneys are looking good. This is all good, promising signs, just what we had been hoping for. We will be having ultrasounds twice a week. 21 weeks another ultrasound Amie-Lee weighs 530grms and Emily 480grms. Heart rates are good, fluid levels are good and the separating membrane can be seen. Fantastic this is good signs! 22 weekseverything is looking very promising, we had Doppler tests with good results. I am resting at home doing absolutely nothing, still trying to learn all I can about TTTS, there are many different outcomes. It seems as though our babies are doing very well and I am getting closer to 24 weeks!! I am certainly feeling like we are very close and the more we get closer to a viable age the safer I feel for my girls. 24 weekseverything is good!! Doing great. Amie-Lee is weighing 680grms. And Emily 600grms. I can feel both babies kicking and moving well. Still being monitored twice a week. I just cant and wont imagine the possibility that anything could go wrong. I do think and am envisioning premmie babies. 26 weeks! Another great ultrasound, there is no signs that TTTS is effecting our babies. Our doctor says that, "If he didn't know better he wouldn't even be able to tell my babies had TTTS" This is absolutely fantastic, best news we could have hoped for. Amie-Lee is weighing 1030grms and Emily 980grms. Wow!!! Can see and feel my belly move really well. We have lost a lot of our fear, and are certain we will be bringing our babies safely home. 24th February 2002 - 27.3 precious weeks I cant feel our babies moving well, we go to the hospital just to get checked, I am quite calm I am not thinking the worst at all. It is a warm sunny day as we drive into the hospital, we both stayed calm and I had my hand on my belly waiting for our girls to give me a sign they are okay. The midwife does the heart monitoring; she has trouble as they do sometimes. I am quite oblivious to the difficulty this nurse is having in finding our girls heartbeat or maybe I want to be as that is easier to believe. I tell myself she is not a very good nurse and that is why she is having trouble. She gets another midwife and a doctor to do an ultrasound, then it is quiet, a void, a silence and I say " WHAT?" She says those words " I am sorry we can not find a heart beat" I say "BOTH ?? well get me someone who can" I eventually had to believe it, when I had a proper ultrasound. It was awful waiting for the scan, we were just sitting standing waiting pacing. We walked up to have the proper ultrasound dreading and wanting the scan all at once. Then I saw all for myself the stillness of both of our girls just laying there. "I asked are you sure, really sure?" I remember the faces of the 3 people in the room with us, but I don't remember their reactions or that they were even in there with us anymore. Just Anthony myself with our babies in my tummy not breathing anymore. Just like that with no warnings or signs our little babies hearts stopped beating. Never did I think that this would happen, not now after we had gotten so far. I had been so sure that we would have two very lucky, miracle babies. Our beautiful daughters. WHY? HOW? I did honestly hang on to the hope that the doctors were are all wrong. I believed that possibly one or both of my girls will have a faint heart beat and be able to be saved. Right up until I held them in my arms, I did hope and wish for a miracle. . Monday 25th February 2002 Our beautiful daughters are born Amie-Lee Ann 2pd 9oz 1170grms at 4.25pm Emily Arnez 2pd 6oz 1070grms at 4.27pm Oh they are so perfect, we got to hold them, feel them, cuddle them and let them know we truly love them with all of our hearts. We took photos which are our most treasured precious memories. The lovely midwife Rory dressed them both in matching sweet dresses, and put a little quilt of love, over them in their crib. Amie-Lee is plum in colour from the extra blood and Emily is quite pale. I am very thankful to the hospital staff that treated our babies with every bit of dignity and respect that they deserve. We feel very proud to be the parents of our beautiful twin daughters. When I was holding my babies I was shaking so hard that their little noses bled. We would lay them back down, I didn't want to be responsible for making that happen to them. But then I wanted to hold them again. Then it came the time to let them both go and try to find a way to say goodbye. I wish I was told of ideas and suggestions of what I could do with my girls to create treasured memories. That is one of the hardest things, you are in shock, everything is numb, I could not think. I wish I had been told or given some ideas of what we could have done with our daughters for lifetime memories. I didnt come out of my room whilst in the hospital, but then we had to actually leave the hospital without our babies, we had to walk out of the hospital with the most aching empty arms. I cant quite describe how it feels to have to walk out of the hospital without your babies. But it is devastating. It is just so hard to take in that this has happened. This is really my girls, my family, me. I have never felt such pain in my life. I am lost, all my hopes, dreams and wishes for my babies are gone. I had those dreams, wishes and plans right from the start, when I found out I was pregnant with twins. Everything has forever changed. Our Love for our babies has never changed and will stay strong for the rest of our lives. 4th March 2002 Today we say goodbye to our girls. We give them a lovely service. Anthony and my Mum made most of the arrangements, his first born children and he is having to arrange a funeral. Our few close friends and family are with us. Our babies have two matching very small white caskets, the room is filled with lovely pink and white flowers with pretty pink and white balloons floating behind our girls caskets. We played the song Tears in Heaven as Anthony and my 12 yr old son carried a casket each while my brother walked with them. Luke wanted to do this, we are so very proud of him We want our girls acknowledged and our love for them both to shine brightly. For everyone to know how much we wanted and love our twin daughters. After the service, we all released a balloon up into the sky and watched them gently float away. We had 4 pink heart balloons which stayed together and the rest where all white. It was a very lovely way to say goodbye. There wasn't much that we could give our daughters, I mostly wanted to give them life. So we made sure that we gave them beautiful special names and a very lovely service. We will love them unconditionally for the rest of our lives. Now I am trying to find a way to get through my days without my daughters. In Memory & In Honour Of My Girls I feel I have been given a gift from my girls to reach out to others in similar circumstance as myself. I have co-founded a support program Australia wide for bereaved parents called Teddy Love Club, www.teddyloveclub.org.auwhere we donate teddy bears to parents who have suffered the loss of their baby to miscarriage, stillbirth or neo natal death. In the hope of easing the pain of leaving the hospital with empty arms. We started TLC on October 26th 2002. The program has touched many family's lives in a very treasured way and I am proud of that. This is not how I had dreamed my life would become but I am dedicated & committed in keeping my promise to my girls to keep their memory alive. I can do this by putting my heart and soul into Teddy Love Club. For me it is comforting & rewarding to honour my girls little lost lives and at the same time give a little something to another who is suffering such heartache. I know that awful feeling of having to walk out of the hospital with empty arms. My hopes and dreams shattered, my arms ached they truly did to hold my babies, to cuddle and love my girls. To have sleepless nights and having to get up and down for feeding and changing my babies. I am changed forever and feel very blessed to be their mother. Trudi Penrose-Starr
Holding Hands Forever and Ever
Everything I can do for Teddy Love Club I do for you my Sweet Angels
I want to help in the awareness of TTTS to honour my daughters little lost lives. There needs to be more information and it needs to be easily available.
It only took a few words. " Sorry we cannot find a heartbeat" to tear apart my life and turn it upside down.
My girls little lost lives have touched my life in so many ways, they have now been the reason to reach out and touch others also.Please click here to sign my guestbook
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