TTTS – They had given up hope of both of them surviving

by Nikki Carpenter

1st October 2003 my body was at a three year olds birthday party, my mind was still recovering from the 5 pregnancy tests I had taken yesterday. The new digital pregnancy test had just been released and I was convinced they didn’t work properly, but somehow the following 4 tests I took didn’t make it real either.  It was a planned pregnancy, but I didn’t expect to fall pregnant within the first week of trying, I somehow thought I would have more time to plan and save.

2 weeks later I began bleeding and experiencing pain, every pregnant woman’s worst nightmare.   I went to my local A & E Department, praying for the best.  I laid on the bed, the nurse looking at the screen, moving the scanner around and looking time and again at my belly and back at the screen.  I prepared myself for the word ‘miscarriage’, but the words I received were ‘one second’ as she walked out of the room.

She returned with another nurse, followed by two doctors, all of whom moved the scanner around and looked at the screen, refusing to utter a word to me.

Finally the doctors left the room, and one returned, and dropped the bombshell on me. There was an empty sac, I had miscarried. Then he continued that there was another sac, ‘you see that little flutter …’ he began,

“Which one ? ” my partner replied,

“Exactly, you’re carrying twins” replied the doctor.

I still don’t know what emotion it was that I felt at that moment. Was it sorrow that I had miscarried,  joy that I was pregnant, shock that it was twins, or relief that it was just twins ? I’m not sure but it was a feeling of panic and confusion that stayed with me throughout my pregnancy.

I had a consultant appointment at the hospital a few weeks later.  I spoke to the consultant who then performed a scan. He spent a long time looking at the screen, before leaving the room and returning with another consultant. Again I felt panic as a scene identical to that of before unfolded.  Finally when they decided to fill me in on the situation, he explained I was carrying identical twins that shared a placenta, he was unsure if they had there own sacs or shared one as he was unable to see a membrane between them. He also said that I only had a matter of days to have pregnancy screening tests carried out. The mad rush that followed as he tried to get me an appointment at Kings College Hospital for the following day left me in a state of shock again, and the panic set in when I heard him say “no it has to be tomorrow”

The following day I was at Kings College Hospital in London being scanned once more. The scan went on for ages as they measured every single aspect.  After the scan, the doctor appeared to attempt to explain what was happening.  He asked if I had ever heard of Twin to Twin Transfusion Syndrome.  I hadn’t, but I didn’t like the sound of it.

He used the words ‘Monochorionic, Diamniotic’ which he broke down to mean they share the same placenta but had separate sacs, and that the blood vessels were not working correctly. One twin was receiving too much of everything and had an 80% chance of fatality through heart failure, and the other twin was being starved of everything and had a 75% chance of fatality.  He went on to talk about donor twin, bladders, sizes, and fluid … but most of this was a blur as I took in the previous statement of 80% and 75% fatality rates.

From this point on I was scanned fortnightly at Kings College Hospital, and each scan was a series of measurements, after each scan the doctor would attempt to shed some light and tell me simply what was happening.

New Years Eve 2003 (17 Weeks),  the third bombshell was delivered. Twin 2 the donor twin had apparently stopped growing, and they suggested  laser surgery, and wanted to book it as soon as possible.  I went home and searched through the internet the facts were shocking and terrifying, the last one kept ringing in my head ‘the survival of at least one twin’ They had given up on them both surviving, and were now focussing on trying to save only one, and again there were no guarantees of this, at this point both my babies were alive, how could I even contemplate a procedure which favoured one above the other.

At my next appointment, I begged the consultant through tears for other alternatives, and nothing he suggested provided me with any form of guarantee that my babies would survive, everything had the word risk associated with it.  I asked the question if they stop growing do they never start growing again’, he looked at me surprised and said ” well yes sometimes they do …”.

That was my glimmer of hope.

A week later I was admitted to my local hospital, they had agreed to monitor the situation very closely for one week.  On bed rest, and a high protein diet I was scanned daily and had the wonderful foetal monitor belt on for what felt like all day.  A week later and Twin two had started to grow again. Another week later I was discharged, but had to return daily for foetal monitoring and had to stay on bed rest.

The next month consisted of weekly scans and foetal monitoring, and total bed rest.  Thankfully each scan showed no cause for concern, one thing that did shine through was the personality of my twins.

Twin 1 … the recipient or larger twin, she barely moved, when she kicked it was exciting rather than painful, at each scan and monitoring they had no problems scanning or monitoring her heartbeat, each scan was a perfect picture.

Twin 2 … The donor or smaller twin, she would not stay still for love nor money, she kicked with a vengeance and certainly let me know she was there, on scans it almost looked as though she was pulling faces at me. They could never find her heartbeat and scanning her was near impossible as she wriggled around hiding behind her sister, scan pictures can only be described as resembling a fish.

It was pretty clear I had one angelic baby and one mischievous one.

At 28 weeks I had outgrown maternity clothes and was wearing size 22 ladies clothing and growing fast and finding things very uncomfortable.  Breathing became difficult as one of the babies pushed upwards.

A week later contractions began and I rang my midwife. The normal panic stricken calls she had learnt to expect from me, she told me it was most likely Braxton hicks ie, practise contractions. Later that night, they were not practising any more.! I went to the hospital and they confirmed I was in early labour, I was given drugs to stop the labour and a week later sent home.

30 Weeks – The following week I was unable to breathe again, I had now found a coping mechanism of gently patting the baby that obviously wanted to live in my chest, twin 2 by the way, and normally she responded politely and removed her feet not before giving me one last kick to let me know she had still won. It was at this point they were finally named,

Twin 1 … my angelic baby … Katelyn … meaning pure.
Twin 2 … my trouble maker … Lauren … meaning symbolic of honour and victory.

At 31 weeks, I met with my consultant at the hospital again – I was beginning to see more of him than family and friends – and again I was met with twin 2 has stopped growing again, and was admitted to hospital. They told me my goal was to try and get to 37 weeks, 6 weeks to go. We scheduled a caesarean, and again the daily scans and the foetal belt which was now more of a fashion accessory returned.  I can remember being allowed home at night over the Easter holiday, but being ordered back to the hospital by 10am, it was like living with a curfew.  At 33 weeks she began growing and I was allowed home.

At 35 weeks I was told I was severely anaemic, and needed a blood transfusion, I was admitted to hospital again on the Monday of that week.  On Wednesday 28th April they decided to give me the blood transfusion overnight, they forgot to mention one tiny detail, that blood transfusions often start labour, which I found out the following day.

They attempted to stop the labour, but unfortunately, this time, those babies wanted out.  I was given steroid injections, and told they would prepare for an emergency caesarean only for them to discover there were no beds available for the babies in scbu.  The following hour consisted of multiple phone calls around the country looking for two beds in scbu.  At 12.30pm I was told they had found beds nearly 400 miles away, and the panic began. At 3pm I was told two beds had become available at a hospital 30 miles away, by this time labour was well and truly in action, sitting and laying weren’t options, pacing was all I could do to stop the five headed monster jumping out of me.

I was transferred by ambulance to the other hospital, and wheeled into a room, within seconds a surgeon and anaesthetist were at my bedside, and five minutes later I was in an operating theatre, I was given a general anaesthetic and my last memory was arguing with the anaesthetist not to insert a new canula into my hand as I couldn’t cope with any more pain and to use the one already there.

My girls were born at 17:12 and 17:14 on 29th April 2004  weighing 4lb 4 and 4lb 10, they both scored 10 on apgar tests and needed no help at all and were brought straight out of the operating theatre and given to daddy and nanny.  So the transfer for scubu beds wasn’t needed, we were kept in hospital for 4 days and then discharged.

Five years on I have two very happy little girls, they are slightly smaller than children there age, but are perfectly healthy, and have no development issues or delays. True to those first impressions I gained as they kicked inside me, I have one angelic loving child who was given everything freely whilst I was pregnant, and one mischievous trouble maker who had to fight for everything whilst I was pregnant, but they are both my little miracles, 20 fingers, 20 toes!

Lauren ‘Little Miss Trouble’ & Katelyn ‘Little Miss Sunshine’

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