Ella & Jasmine by Steph - Australia

TTTS Parent Stories: Ella and Jasmine

On the 16th of June 2002 ago I miscarried my identical twin girls "Ella" and "Jasmine" at 19 weeks gestation. The circumstances under which our first baby Ella was born was incredibly traumatic. We were on holidays (our apparent "last holiday" before their birth) and I felt a bit off. My back hurt, I felt a bit immobile and just "not right". Didn't really think much of it.

I lay down for a rest and woke up to feel only what I can describe as "a big membrane cyst" coming out of me. I sat on the toilet and this bag of fluid exploded. I was on a remote island in the south pacific (we live in Australia so it wasn't that far from the mainland) so I was really worried, phoned my obstetrician who told me to get off the island immediately and straight to a hospital. I was taken by boat to a waiting ambulance and rushed to hospital.

I spent 2 more days in a remote hospital that only had one doctor who had no idea what he was doing. I was not examined until an hour before I was discharged. We left after being told it was a "false alarm", feeling on top of the world. We drove 100kms to the nearest hospital and found a resort nearby just in case.

That night, I thought I was just constipated and was having pains associated with that. This was my first pregnancy and I didn't realise that these pains were actually contractions. At 10.30pm I sat on the toilet and my first twin was born. I still cannot comprehend the horror of looking down and seeing her hanging helplessly by her umbilical cord.

I was rushed by ambulance to the hospital where 3 hours later our second twin was born. I had to go into theatre to have the placenta removed. I am so glad I was in a large hospital rather than the backyard pathetic place I'd originally been taken to. I now have a new found respect for nurses, mine were incredible. As it turns out, my membranes had ruptured prematurely.

At first I didn't want to see my babies, but am eternally grateful to the mid-wife who was so persistent in asking me, telling me it would help with my grief. I relented and cannot tell you how much regret I'd feel if I hadn't seen my two beautiful angels.

That night, 12 hours after returning from theatre, I woke up from my drugged out state and was hysterically inconsolable. My husband by my side, comforting me as I sat on the floor of my hospital room, could not bare the sight of me sitting in the corner screaming out for my lost babies. He asked the night nurse if they could give me something to sedate me and help calm me down - as I was in such a hysterical state. The nurse came in, sat beside me, and lectured me on the risks of becoming a drug addict. She told me I shouldn't run from my emotions and that drugs were not a solution. I'll never forget how insensitive and thoughtless she was.

My grief has changed from day to day and I think the reality is only just setting in. All our hopes and dreams shattered, we felt so blessed to be having identical twins and now feel so confused as to why they have been stolen from us. I feel like the shock is over and I now feel worse than ever.

I feel so many emotions: total devastation, confusion, anger, guilt, numbness, frustration, emptiness, and most of all a complete and utter sense of loss. I'd give anything in the world to just pat my pregnant belly one last time. The stretch marks I once hated so much I now adore, as they represent the precious cargo my belly once carried.

I don't know how to face the future; I get no enjoyment out of anything except going to sleep at night and being able to forget about this nightmare for a few hours. I can't even do this sometimes without the help of sleeping tablets, as I wake up hysterical at 3am. Every time I swallow one of those tablets I think about what that horrible nurse said to me.

I yearn for another baby, I know my chances of having twins again are minimal, but I'll be satisfied with just one. I'm terrified something is wrong with me and that I'll never have children - that they may have done something wrong in theatre to make it impossible to conceive. This is probably rubbish but I see the worst side of everything. I no longer pay attention to statistics.

My obstetrician is convinced the miscarriage was due to my "high risk" pregnancy, however an infection was found after the miscarriage. We'll never know what caused it. Because there was over 48 hours between the membranes rupturing and actually delivering, the infection could have been picked up then. There is nothing I can do about that though and hold nobody to blame.

It makes me feel worse that after all the hours of pouring over the internet, that so many other couples suffer similar things and I can't believe there can be so much grief out there due to this type of tragedy.

Over the next few weeks I spent hours and hours each day trying to research why this happened. My obstetrician seemed to lose interest in me as she knew we were moving state and I would no longer be her patient. I tried to list all the symptoms I had prior to my babies being born and they were:

• I was enormous, rapid increase in weight gain from 15-19 wks.
• Almost 20% difference in babies birth weight.
• Ella was so red in colour, when I first saw her I asked the nurse why and she didn't know. It was my first comment when I first laid eyes on her.
• Jasmine was so pale, almost creamy white in colour. Her head was much longer and black on top, they told me her head was black from pushing through the birth canal but I know that's not true. She was second born and was also born alive.
• I was so short of breath for about 6 weeks before they died. Talking on the phone would take my breath away.
• Very hard stomach under my breasts. felt like it was about to explode.
• When I had an u/s after I'd been admitted to hospital (very backward inadequate hospital) the radiologist told me "oh, they aren't identical I can see a distinct membrane separating them". I had already had 7 u/s's in my home city and they were done by professional obstetric radiologists who checked countless times that they were identical and confirmed this.

After much research (and Trudi's suggestion) I started looking at Twin Twin Transfusion, which I now believe was responsible for Ella & Jasmine dying, it's either that or an incompetent cervix which I doubt slightly. So I guess we're about 90% sure it was TTTS. It really bothers me that nobody took the time to look closely at me when I was first admitted to hospital. And that I'll never know what really happened. I miss them so much. No doctor has been able to state exactly what happened - and to be honest I now have a great deal of trouble trusting any doctor at all.

I so long to be pregnant. I'm 29 but my husband is 43. He worries that time is slipping away and thought that me being pregnant with twins was him "making up for lost time". It breaks my heart to see him cry, I'd never seen him cry before we lost our babies and I have now seen him cry dozens of times. He is just so devastated. The only thing that has come out good from this whole tragedy is the fact that he and I are closer than ever - and I am so lucky to have such a beautiful husband.

Thank you all for listening, without these chat groups I'm sure I would have admitted myself to a mental home for a while. I honestly feel like I'm losing my mind sometimes. I hate that total grief that consumes you and makes you unable to function at all.