I am a mother to identical twins Daisy and Rosie.
My scans were never fun towards the end of my pregnancy. A couple of hours each time, numerous Dr’s, many opinions.
In week 33 I had a troubling scan, my third scan that week, I was told after 4 hours of waiting and discussions with Dr’s that “these babies need to come out today”. I asked what the worst case scenario was if they didn’t, I was told “you don’t wanna know”.
I was given a steroid injection and unfortunately no bed was available, with two isolettes, so I was sent home to return at 7am the next morning for my emergency C section. I was already originally booked for a C section so bringing it forward was not a concern for me. My mentality was ‘if I can do them no more good inside me, let’s get them out and fix them on the outside’ there is absolutely no room for guilt at not being able to carry them any longer, this was becoming a life or death situation.
I turned up at the hospital 7am the next morning, I was admitted to a room and given a gown, I was ready to go.
It was a Saturday, yet another change of staff, a new Obstetrician introduced herself to me and informed me “we are going to postpone you till Monday, we don’t have enough staff and someone is coming in requiring brain surgery”
I said NO! absolutely not, if the Dr told me these babies need to come out yesterday then I need you to go away, call him, check my scan records THEN come back and tell me what you are going to do!
Sure enough, 15 mins later she came back to my room and informed me, we will take you down now.
Daisy was born at 1.06pm, Rosie followed 6 mins later. Daisy was handed to my husband while they struggled to resuscitate Rosie. She was 1.5kg, I look back now and I know this was a diversion. They knew TTTS had set in and they knew how sick Rosie was otherwise why would they hand us Daisy so quick. The Dr’s stabilised her and wheeled her past us in an incubator saying “we need to get her upstairs now” I said ok, I was fine, I have no other children so I had nothing to compare it to.
My husband went with her, according to her discharge notes they did 11 things to her in 6 minutes to stabilise her, she was intubated and placed on oxygen for 48 hours. I held her when she was 3 days old.
When I was back in my room later, the obstetrician came and apologised to me, “we shouldn’t have put you through that” she said, Twin to Twin is sometimes detectable, and can be treated with laser, sometimes not, at 3 scans a week in those last week’s still nothing showed up, it can set in during delivery. Mine was just not found until week 33. Daisy had stopped growing and her cord blood flow was slowing down.
At 8 months, on a routine maternal health check, the nurse thought Rosie’s head was growing too quick. We took her to the Dr and she agreed and we were referred to a neuro-surgeon. Rosie then underwent an MRI under sedation and the neuro-surgeon diagnosed her with hydrocephalus (water on the brain), we believe this was caused by brain bleeds in the womb due to TTTS and her being our recipient, also due to the ‘heroics’ the Dr’s put her through to save her life shortly after birth, as is very common in premature babies the bleeds went undetected, they in turn scarred over blocking her ventricles in her brain. They operated to relieve the pressure and inserted a shunt, this will drain her brain fluid into her tummy for the rest of her life.
Yes my twins are TTTS survivors but its not been without anxiety, trauma, and now an ongoing illness which requires my husband and I and anyone in contact with Rosie to be diligent with her care, if she vomits, has a continuing high temperature or becomes lethargic she needs to go to emergency. We have been admitted to hospital multiple times since her shunt was inserted at 8 months old. At 3 years old her shunt began to malfunction almost weekly, I collated stats like a nurse over 6 months, temp changes, how many times she vomited, did we go to hospital, yes, no. It was a tough 6 months but our neurosurgeon had to be sure. He performed another brain surgery on her Jan 2016 which was one of the hardest days of our lives but she is doing well. Last year 2019 she became unwell on New Years Eve, at 6am New Years Day 2020 she went into emergency brain surgery, another followed 7 days later after brain bleeds were stabilised and she underwent stomach surgery to remove scar tissue from her tube insertion and put in a new shunt. We left 16 days later.
I see a therapist regularly to help me cope with our situation and she gave me the best advice, Instead of waiting for Rosie to get sick again I tell myself and anyone who asks how she is, “today she is well, if she gets sick tomorrow then we will deal with it tomorrow, but for today she is well.”
The twins are now 8 years old and at school, I have provided info to them about her symptoms and her care and just hope every day that when the time comes, she is looked after till we can get to her.
I think back now and know that my refusal for my delivery to be postponed saved Rosie’s life. I urge mothers in my situation, pregnant with twins that could be at risk, if you want a second opinion get one, if you want more scans, ask and get them or pay for private ones as well as the public hospital ones. And if at any time you feel strange or different, or do not agree with what a Dr tells you trust your instincts, like me, you could be saving your babies lives.
Laura Russell
