Amie-Lee & Emily - Australia

TTTS Parent Stories: ~Amie-Lee & Emily~ 

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 am fit and healthy. I have two 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 we found out I was pregnant, we were thrilled. I weighed 69kg. By the time I was 8weeks pregnant I was showing, I was terribly sick with morning sickness and extremely tired.

At 9 weeks 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.

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 Lyell McEwin 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 13weeks I had a nuchal fold ultrasound test, from that the clinic doctor said my babies were identical. She said 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. I was 71kg.

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 only because I was carrying twins, from what I had read and been told I had no reason to think otherwise.

At 19weeks 28.12.2001 we went for the routine ultrasound. We were so excited and really wanted to find out the sex of our babies. 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 Womens and Childrens Hospital.

W.C.H. 29.02.2001 we went to the Emergency Department and luckily got to see Dr. Arnez B. 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). She 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 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. There were no complications from the amnio.

01.01.2002 I was discharged, will be treated at W.C.H. now.

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 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 bedrest, 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. I am able to understand what the doctor is talking about better.

08.01.2002 We 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. 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.

22 weeks everything is looking very promising had Doppler test with good results. I now weigh 72.5 kg. 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!!

24 weeks everything 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.

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”

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.

27 weeks

Another great ultrasound, everything looks just perfect. We are feeling so certain that our daughters will be safe now.

27.3 weeks 24.02.2002

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. The midwife does the heart monitoring; she has trouble as they do sometimes. She gets 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 didn't want to hear her, and I really thought she had gotten it wrong. I eventually had to believe it, when I had a proper ultrasound. I still thought maybe they are wrong and I clung to that only hope right up until I held them. I did hope and wish for a miracle. .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?

Monday 25th February 2002

Our daughters are born …

I chose to have a caesarean delivery.

Amie-Lee Ann 2pd 9oz 1170grms at 4.25pm

Emily Arnez 2pd6oz 1070grms at 4.27pm

Oh they are so perfect, We got to hold them, take photos and say goodbye. We have such treasured precious memories. We are very proud to be the parents of our beautiful twin daughters. 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.

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. Then it came the time to let them both go.

We were told that we could do what ever we wanted with our girls. 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.

It is just so hard to take in that this has happened. This is really 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.

Monday 4th of March 2002

~Amie-Lee & Emily's~ Funeral

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 our special family are with us. Our babies have two matching very small white caskets, the room is filled with lovely pink and white flowers. 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. We wanted everyone to know how much we wanted and loved our twin daughters. After the service, we all released a balloon up into the sky and watched them float away. We had 4 pink heart balloons and the rest where all white. It was a very lovely way to say goodbye.

There wasn't much that we could give our daughter's, 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.

Twin Angels
Last night two little angels
Came and whispered in my ear.
And this is what they told me
“Don’t worry Mummy, we’re right here.

It feels like a long time
Since we last felt your touch.
And we wanted you to know
We miss you, Daddy, Luke & Renae so very much.

We know that you love us
And think of us every day.
And it makes us very sad
That we had to go away.

But we know that our memory
Will never ever die.
And we know that sometimes
When you think of us you cry.

But don’t worry Mummy
There's so much here to do.
And every day remember
We are watching over you.”

Then my angels kissed me
As tears rolled down my face.
And I knew we’ll all be together again
Another time. Another place.