TTTS Parent Stories: ~Sar~Sarrah~ and her surviving twin Taliah
The day of Tamara’s christening (my daughter) and I had a sneaky suspicion that I was pregnant. I had taken a test that morning but the positive line was very faint and I was unsure. I already had 2 boys, Nathan 3yrs and Jarrod 2yrs and Tamara 10 months. I really wanted another daughter, two of each would be perfect and I would be done having children. A few days later I took another test and the positive line was certainly positive – I was definitely pregnant. I told my husband and as this was my 4thpregnancy, I thought I knew how to have babies like falling off a log. I was very pleased that I had never had a problem falling pregnant, I had never had problems during pregnancy, I had always been lucky. Well my luck was about to run out.
The first trimester was horrid, I was sick, nauseas, headaches, feeling rotten every day from start to finish. I consulted a Dr as by 10wks I had lost about 4 kilos and I was a little worried, but my Dr said it was normal to feel sick and not to worry about my weight loss as the first trimester would soon be over and then I should feel better.
Monday August 20th 2001 (11wks, 3days)
I had started spotting, I phoned the hospital and they told me to phone my Dr. I did and he said it was quite normal in the first trimester, not to worry unless I began cramping or clotting. It was over as quickly as it started so I stopped worrying.
Thursday August 30th 2001 (12wks, 6days) FH = 13wks
My first clinic appointment, usual stuff, history, blood tests . They asked me if I would consider doing shared care with my Dr as the hospital clinic was quite busy and sometimes I may have to wait long periods to be seen. I had 3 children and I thought it would be better to be seen by my GP rather than drag my children to the hospital and then have to wait. My own GP was not qualified for shared care but one of the Drs in the same practice was and so I would see her from now on.
The nausea eased a little but didn’t stop. At 16wks I could still wear my jeans, by 18wks I wore maternity clothes I thought I was bigger than normal but just put it down to my 4th pregnancy and the old tummy muscles not being what they used to be
Tuesday October 9th 2001 (18wks, 4days)
The day of my ultrasound arrived and I felt confident it would be a little girl. As I lay down on the table waiting anxiously to see my baby, the technician asked me if I had had a good pregnancy so far, I replied jokingly “No, I have been ill morning, noon and night, so you better not tell me there’s more than one”. She laughed and as she put the wand on my tummy she looked surprised and said “you don’t want to know about that do you?” I looked at her and asked if she was kidding, there on the screen were two beautiful babies. I was having twins, WOW, that would mean 5 children under 5yrs, how on earth would I cope?. I’ll find a way, WOW, I’M HAVING TWINS, I felt very blessed.
As I lay there stunned and excited, the technician moved the wand from side to side up and down and said she couldn’t see a dividing membrane and thought that my babies shared a sac. She also said they looked smaller than their dates by one week and thought my dates were wrong (I knew my dates were right). She had trouble seeing one of the babies as it was right behind the other one and the sonogram had to go through the first baby to get to the second and the picture wasn’t clear. She measured their heads and said they were very similar in size (BDP 4.1cm & 3.8cm, HC 13.9cm & 13.5cm ). One baby wasn’t moving as well as the other, tucked in a ball, I asked her if they were alright and she said “they’re perfect “ all looked well and asked if I could come back in 2-3wks in the hope they would move into more desirable positions. I walked out in a daze of happiness, made another appointment for October 26th. I also had the Maternal Serum Screen test for abnormalities. The lady in pathology was excited for me as well. I went home thrilled and excited and that night we told everyone about our exciting news.
Thursday October 11th 2001
I had a phone call from the hospital to say that Professor Bryce wanted to see me on Friday November 2nd at 9.00am. I thought it was because I was having twins and this was normal, I was pleased they were going to keep an eye on things.
Over the next two weeks, my tummy was hard, rigid to touch and sometimes sore but I was still able to carry on with my days looking after three young children. I felt sick, had bad nose bleeds and began to worry. I seemed to be thirsty but no matter how much I drank, I never seemed to go to the bathroom very much, so I thought I needed to drink more. I thought things were different because I was carrying twins.
Wednesday October 17th 2001 (19wks, 5days) –FH 27cms
I saw my GP and she took my fundal height measurement which was 27cms, She said the measurement was normal for twins. The nose bleeds were normal and the nausea was normal, I was having twins and I had to expect things to be worse than a normal pregnancy.
October 26th 2001 (21wks)
Finally the day arrived, it was time to see my twins at my next ultrasound. We arrived, I lay down excited, the tech came in (a different girl this time), she looked for a minute and then said she would get some one else as she wasn’t very experienced with twins and she would probably take too long. Another tech came in and she started the scan, while she took measurements of the first baby she talked about what she was doing, baby was still one week behind with measurements, but fine. She told us it was a little girl and I was ecstatic, I had always wanted Tamara to have a sister, then I got really excited, they must be twin girls. She then found a membrane between them, now I was confused, were they identical or fraternal. She said she couldn’t tell as by now the placenta was too big to say if it was 2 fused together or one. She went to the second baby and I anxiously waited for her to tell me the sex, she took two measurements and then turned off the machine,.
Me “Is it a girl I asked”. her face looked grim,
Tech “I didn’t look, there is a problem”,
Me “is it bad”,
Tech “I’m afraid it is – the most important thing I haven’t been able to find
– is the heartbeat”.
Me “LOOK AGAIN”,
Tech “I’m sorry, I’ve looked for it 4 times, there isn’t one”
Me “Oh my God, my baby is dead. How long ago did it die”
Tech “about 2wks by the size it is now, here’s a box of tissues”
She went to get the Dr to verify the findings. I sat there dumbfounded, this couldn’t be, it was only 17days ago that I was told I was having twins, this isn’t right. The Dr came in and confirmed the findings and then said I had to speak to the OB on duty. Andrew and I waited in a room alone quietly, it seemed to take forever, I wanted to leave, this was a bad joke I thought.
The OB on duty came down and explained that this sort of thing happens, it is very rare to happen so late but the vanishing twin syndrome is quite common. I was confused. I was in my 2nd trimester, once you get passed the 1st trimester aren’t you safe?? They told me to prepare myself for the death of my surviving daughter, the Dr had only seen two previous cases of a twin death in the second trimester, in the first case the surviving twin died within a matter of days, and with the second case, the surviving twin died because of premature labor at 24wks. MY GOD, what is happening? why is this happening? what the hell happened? she was alive 17days ago. The Dr told us it was very strange as they appeared to be the same size two weeks ago, so this was totally unexpected. They told me to come back on Monday to see if my little girl was still alive. We went home and started to phone relatives, no matter how many times I said it, I didn’t believe it.
That weekend was awful, I didn’t eat, I didn’t sleep, I walked around dazed, I couldn’t take care of our other children. My husband had to stay strong for them and function as I was not able to. I searched the internet over and over and blamed myself for everything and anything, I didn’t eat right, I didn’t look after myself, I deserved this, I should have done it better. I should have known things weren’t right. I should have gotten a second opinion when I thought the very first scan looked funny, why didn’t I. Now I would pay the price for my mistake and so would my little survivor. I then found a website on TTTS. I read about the “stuck twin” OH MY GOD. That was what my scan looked like. Did my babies have TTTS?
Monday October 29th 2001 (21kws, 3days)
Monday morning came and we went back to the hospital, I asked the dr if it could have been TTTS, he was doubtful as TTTS usually affects both babies, not just one, and their sizes were similar. They were quite certain by now that my twins were fraternal as the death of my little one had no affect on Taliah, she was still alive and appeared to be doing very well but she was still 1wk behind with her size at the last scan. They sent me home and waited to see what Professor Bryce had to say, I was to keep this appt that had been made previously.
Friday November 2nd 2001 (22wks) fundal height - 26cms
That appointment was horrible, Professor Bryce first offered his sympathies and then explained the risks, there was a 25% chance Taliah would die in utero as well, 50% chance of neurological damage should she survive, anything from slight developmental delays to cerebral palsy and a 75% chance of premature labor anytime from now. I thought my world had ended but then it got worse, I was offered a termination of the pregnancy and since I was only 22wks, I had until 24wks to make up my mind. This wasn’t happening, this couldn’t be real, how did my blessing turn into this curse, my dream into this nightmare. If I chose to continue the pregnancy, I would have blood tests weekly, check ups fortnightly but I will be seen weekly for a while and scans monthly. My next ultrasound was booked for December 7th. I still didn’t believe it and I thought the next scan would prove that they were wrong and my baby would be alive. I had movements all over the place, surely one baby couldn’t be all over the place like that.
Friday November 9th, 2001 (23wks) fundal height = 25cms
I decided to continue the pregnancy and try and bring my survivor into the world and please let her be OK.
Friday November 16th 2001 (24wks) fundal height = 24cms
A Med Student is given my file and calls me in first. I am now an interesting case. Taliah’s heartbeat is good and strong, she is moving well. We were over the worst, Sarrah had been gone for over a month now and Taliah was doing well, the prognosis improves, I will be seen fortnightly from now on. I ask about my Maternal Serum Screen test and was informed by the midwife that the result was “increased risk“ for a twin pregnancy. Professor Bryce said it was because my baby was obviously dying then and no one could have done anything about it. I asked why no one contacted me about the results and was told that it usually means nothing so they don’t bother as it causes hysteria and most abnormalities can be seen on scans now anyway.
Friday November 30th 2001 (26wks) fundal height = 24cms
Taliah is still doing very well, the Dr organizes a visit with a counselor to try and help me emotionally through the pregnancy. Carrying two babies, one live, one demised was straining everything, my marriage, my children were upset, I was a mess.
Friday December 7th 2001 (27wks) U/S
Taliah is healthy and thriving, still measuring 1wk behind but everything ok. Then they looked at my angel, still in the same position, still laying silent on the screen. My baby WAS dead. This WAS real. This wasn’t a nightmare, this was my life now.
Tuesday December 11th 2001
I phone Labor and Delivery, I can’t do this anymore, I can’t carry one live baby and one demised baby, it is too draining emotionally. If I try and move forward, I feel guilty for Sarrah/Daniel, if I grieve, I feel guilty for Taliah. I tell the Dr, I want the baby out although I know what his answer is before he says anything. There is no choice, if they take my baby, then Taliah will have to come out too and it is too early, I have to keep going, I have to keep going.
Friday December 14th (28wks) FH = 25cm
We’ve made it this far, keep going Taliah, please keep going. I see the counselor and she is sympathetic and tries to comfort me. She is going on holidays over Christmas and can’t see me for about 7wks.
Monday December 24th 2001
I go shopping for last minute Christmas things, I hate it that everyone is in the Christmas spirit and I am miserable. I haven’t felt Taliah move all morning and decide to go to the hospital for a check, she is ok.
Friday December 28th (30wks) FH = 27cm
Now we have reached 30wks, things are looking better. I start to grieve terribly now for my lost little angel. I am very low and lonely, trying to care for my children, not sleeping, crying over anything and everything.
Friday January 11th (32wks)
I cancel this appointment. Emotionally I can’t take anymore, I no longer want to be reminded of my nightmare. I tell Andrew that I will no longer go to appointments by myself, he agrees to go with me from now on. I enquire about the Prenatal Program and I am told that I should qualify because my baby died around 20wks and I can’t deliver until 38wks, so I start to think of what I would like done.
Friday January 18th 2001 (33wks) – FH = 32cm
The Dr feels my tummy, she comments that Taliah appears small, but is doing okay
Thursday January 24th 2002 (33wks 6days) U/S
Taliah is going well, she has picked up in size and is now measuring 33wks 5days. By now I was numb, I felt nothing for Taliah, and nothing for my angel, just lost. Dealing with the unknown was driving me deeper into despair, Would Taliah make it, would she be ok? What happened to her twin? Why were there no answers or guarantees? How would I handle the birth? How do I go on after the birth?
Friday January 25th (35wks) - FH = 35cms
Taliah is strong, a caesarean is booked for Tuesday February 26th. I can’t wait that long. I want it over now. I emailed Professor Bryce telling him how I feel and he agreed to an earlier date, the Caesarean will now be done on Friday February 22nd. It is only 4 days earlier, but anything will do.
Friday February 8th 2001 (37wks) - FH 37cms
I have a lot to do today. I see the anesthetist regarding the C section, then clinic, Taliah has good fluid, everyone is pleased and very hopeful. She has defied all the odds so far. Professor Bryce has never before had a case of one twin dying midway through a pregnancy and the other twin continuing the pregnancy.
I have cried at every blood test, every appointment and every scan. I asked at ever appointment what could have gone wrong and I was told I would never know. I had found the TTTS message board and some of their stories were very similar to mine only they knew for sure that TTTS had taken its toll on their lives. I was still left with so many questions.
February 22nd 2002
A date full of two’s but now only one baby to bring home. Taliah was born a healthy 7lb 1oz, she had the cord wrapped around her neck twice but apart from that, all went well. They took her to NICU straight after I held her because she had a few problems getting her breathing going but she was only there 12 hours. They were a little worried in the beginning that she had a virus which was causing the breathing problems, but the blood test was all clear and she soon picked up. I didn’t know whether to see or hold my angel. The surgeon wanted to send my angel to autopsy still enclosed in the sac so they would possibly find an answer as to cause. I agreed and chose not to see my baby. I had been told previously that I would qualify for the prenatal program where the hospital subsidies a funeral but when my angel was delivered, I no longer qualified as they said she was too small and was only the size of a 16wk fetus. She was alive at 18wks 4 days, the day of my first scan but my pleas fell on deaf ears and she was to be treated like a miscarried baby unless I chose to take care of her myself.
Monday February 25th 2001
I leave the hospital to come home with Taliah, I sign the autopsy form and hope that they can tell me what happened.
Tuesday February 26th 2001
Women’s and Children’s Hospital phone and say they have finished with the autopsy and we can collect the remains from Flinders tomorrow.
I found a funeral home who would take care of my baby with dignity, they cremated my angel and she was returned her to us in a little white box – yes she was also a girl, the autopsy had confirmed it and the funeral home told us, she was a beautiful little girl, Sarrah, I then started thinking, two girls, most likely identical – TTTS?. Now the pennies started to drop, had I been right all this time. The interim autopsy report stated the placenta “appears monochorionic” but the Professor was still hesitant saying there was only a 50% chance that they were identical and that TTTS doesn’t happen until later in the pregnancy, above 20wks. He dismissed my symptoms as coincidences. I phoned one of the Dr’s at Histology and I was told that TTTS was the most likely cause of death although they couldn’t prove it because Sarrah had been gone for some time. The final autopsy report proved that they were indeed identical girls. I asked the ultrasound department for more pictures and to tell me which baby died. No one can even tell me for sure, one Dr said Twin I (the little one tucked in a ball), another said Twin II (the one with more room).
Taliah is a very healthy and happy baby girl. She is loved very much by her siblings but I wonder if she will still long for her identical twin sister. I wish I had known about TTTS sooner, what symptoms to look for, I wish I had known I was carrying twins earlier, I wish my Sarrah was here. I fought so hard to get the answers as to why she died. More people need to be aware of TTTS before it damages more lives. I wish no one had to go through the pain of losing a child/ren.
If you are going through a TTTS pregnancy, be vigilant, get second opinions if you want them, ask as many questions as you can think of and get all the answers. Never take for granted how quickly TTTS can take hold of you lives and destroy your dreams.
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