Rachel's story

I had my second cycle of IVF after years of trying to conceive, of miscarriages and one failed cycle.

My decision on embryo transfer

The decision on embryo transfer was not easy. Just before my treatment began, I had read a study published in the journal Human Reproduction*, which found that transferring a single embryo was as likely to result in a birth in women aged 36–39 as younger recipients of fertility treatment.

"… I was made to feel that I was complicating proceedings and that opting for a single embryo transfer is a decision for younger women."

At 37 I was eager to discuss its findings with my clinic. But I was made to feel that I was complicating proceedings and that opting for a single embryo transfer is a decision for younger women. Reluctantly, I chose to put back two embryos. 

My experience of multiple pregnancy

I had a scan a few days earlier than the scheduled 7 weeks scan after experiencing niggling pains. Two tiny, miraculous lights flashing on the screen showed a twin pregnancy. Exhausted by the anxiety and the news, I went to bed as soon as I got home. When I got up, a stream of blood was unleashed, and it seemed obvious I was miscarrying. My husband rushed me back to the clinic where, mute with shock, we sat gawping at the two heartbeats twinkling back at us.

I was scanned the next day at the Early Pregnancy Unit (EPU). It was explained that I had a blood clot (a haematoma), under the developing membranes. All we were told was that there was an increased risk I would miscarry and that they would scan me at regular intervals. Desperate to find out more, I turned to the internet but searched in vain for anything really useful or reassuring.

"All we were told was that there was an increased risk I would miscarry and that they would scan me at regular intervals."

The bleeding continued for two weeks. I spent most of my days lying on the sofa getting through a pile of books and bunches of bananas, but I felt it was the best I could do for my babies. I longed for the days to pass so I could see on a scan if they were both still alive.

An anxious time

Seeing lights flashing from two jellybeans at 8 and 10 weeks brought tears to my eyes, and jokes from my husband, but the second twin was much smaller than the first. At the 12 weeks scan, when we also had the Nuchal Fold Translucency test, it was explained that our second twin was smaller than more than 95% of babies at that gestation. The sonographer confirmed that the next day we would be seeing a consultant for the first time.

That consultant was a twins specialist, but most of our appointment was devoted to talking about the results of the tests for Down’s Syndrome. It was plain that it was a standard appointment to discuss those tests, not one specially arranged because the pregnancy caused concerns. We were unable to believe how little information and reassurance we came away with.

Further scares

Two days later the bleeding started again, and the first person we saw was a GP who was able to detect two speedy heartbeats. At the hospital, I spent most of the day waiting to be scanned. Unbelievably, the scan showed both babies were still alive.

An anxious three weeks of further bleeding followed, but when we saw our consultant, he seemed unable to comprehend why I was exhausted and emotional. To my great relief the bleeding stopped soon after.

A Doppler scan revealed that our second twin’s growth was so restricted because he had only a single artery in his umbilical chord, not two.
When I reached the third trimester I dared at last to look at things I needed to buy. But at 28 weeks and 2 days I woke in a pool of blood at 4:00 am. I was petrified and did not dare stand up. My husband called an ambulance and I was soon speeding towards the hospital.

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"I spent the final two weeks of my pregnancy in hospital, going between the ward and the delivery suite."

I spent the final two weeks of my pregnancy in hospital, going between the ward and the delivery suite. The question I asked most was about the availability of beds in the neonatal unit (NNU). I was well aware of the risk that either I would be shoved into an ambulance and taken thirty miles to the region’s largest hospital, or that my babies would be rushed there in their incubators – a prospect that terrified me.

My experience of multiple birth

I had been in hospital exactly two weeks when I was, beyond doubt, in labour. I had experienced severe pain for 24 hours. After a night in agony I demanded to see a doctor the moment the morning shift began.

In the delivery suite, the consultant I had seen two weeks earlier was on duty. The first baby was so far on his way that I was told the epidural being prepared was in case an emergency caesarean was needed for the second twin.

As the anaesthetic slowed labour down, my husband and I were then left in a delivery room with a midwife checking on me. When the contractions were advanced enough, I was wheeled back into the operating theatre where 10 people were waiting. Two incubators were ready to cocoon the twins in the trip upstairs to the NNU.

"When the contractions were advanced enough, I was wheeled back into the operating theatre where 10 people were waiting."

When my elder son was born, bawling in protest at being dragged out, the consultant held him up to me before handing him to a neonatal nurse.

The second delivery was a breech birth and the epidural slowed things down. When my younger son was pulled out by his tiny feet, he did not complain much. He was brought to my side, spitting out blood. He strained to see me and blinked at the lights as he followed the sound of my voice. He was tiny, but exquisite, and nothing had prepared me for the whoosh of emotion that came over me.

In the NNU

My elder son weighed 1.6kg, my younger one 1.06kg, but to everyone’s relief the initial assessments of their condition were positive. They only required help with their breathing, using Continuous Positive Airway Pressure (CPAP), for the first 24 hours.

It is life-changing to see your tiny, fragile baby in an incubator, covered in wires attached to monitors beeping away. We were encouraged to change our sons’ nappies and to talk to them, but took them out of their incubators only a few times.

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"It is life-changing to see your tiny, fragile baby in an incubator, covered in wires attached to monitors beeping away."

I was urged to breastfeed but I couldn’t produce enough milk for two. While my younger son was fed exclusively on my milk, my elder son had to be supplemented with formula or donor milk. Still he made good progress. My poor younger son seemed permanently under UV light, wearing his little mask. Nevertheless, when the consultant saw them at five days old he was very encouraging. I felt so positive I discharged myself from hospital.

A scare

The next day things swiftly changed. In the evening a nurse told me she had found blood in my younger son’s stool. At two in the morning, we were in our car, speeding down the motorway.

When babies are born, their intestines are sterile and are then colonised with bacteria. For a premature baby with immature intestines this is a risky process, and my younger son had contracted necrotising enterocolitis (known as NEC), an infection that mostly affects low birth weight babies. It eats away at the lining of the intestines and can lead to a hole developing, which allows the contents of the gut to leak into the abdomen. This is what happened to my younger son.  

Desperate measures

Surgery was the only chance of saving him, and the nearest hospital with a surgical unit was over 70 miles away. But first a specialist transfer team had to come from another hospital to transport him there, and they had to prepare him for the journey. Doctors crowded round his incubator, trying to insert lots of fine tubes inside him, and we were advised to go on ahead to the hospital.

There we waited for hours longer than anybody had anticipated.

Our son made it to the hospital and anxiously, we waited for the team of surgeons. They explained that my son’s blood pressure was still very low, and it was not possible to operate until it improved.

At two in the morning they decided to operate. Half an hour later they changed their minds, and for the next hour I sat with my poor son in my lap, willing the figures on the monitor to improve.

An agonising decision

But they never did, and after lengthy discussions with the surgeons and his consultant we were faced with a choice. We could send him to the operating theatre, in which case, we were warned, there was a high probability he would die there, or we could agree to palliative care – which meant letting him slip away gently.

We were told that after such a long period of low blood pressure, it was also highly likely that our son had suffered brain and organ damage, so my husband and I were in complete agreement. Our son had suffered enough, and we could not bear the thought of him dying under a knife, or in a corridor.

When they left us, we clung to each other and sobbed.

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The loss of our younger son

We were shown to a small room where, wrapped in the shawl his grandmother had knitted for his christening, our longed-for son lay in my arms until we signalled to his nurse that we were ready to let him go. After the neonatologist came in and took his breathing tube away, I kissed then rocked him as he left us.

I went to the expressing room while my husband talked to the doctor about paperwork, and when that was done we returned to the room to find him laid out in a Moses basket.

We said our last goodbyes, then left with a snippet of his hair, prints of his feet and broken hearts.  

Life after loss

Eight weeks after our twins were born we took our surviving son home and, like every day since, our joy was tinged with sadness. We are blessed to have a beautiful, healthy boy, but our younger son touched us so deeply that we are always thinking of him.

"Eight weeks after our twins were born we took our surviving son home and, like every day since, our joy was tinged with sadness."

A nurse had told me that grief was something I could see as a box, that I could choose when to open it and to think about my lost son. Maybe that will be the case some time far in the future, but not now. I think about him every time I put his brother to bed at night and when he smiles at me when I get him up again. I often lie awake at three in the morning thinking back to what it was like being with him in a crowded intensive care unit at that same ungodly hour. When the thundercloud of depression descends it can be crippling.

"I think about him every time I put his brother to bed at night and when he smiles at me when I get him up again."

People planning fertility treatment may read this and think, “It’ll never happen to me.” But I never thought I would need treatment, and I certainly never imagined that one day I would take time out every weekend to tend my son’s grave. I have buried both my father and son, and the tears I cry for my son and the life he might have had are much harder to bear. I miss him desperately.

* Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology (ESHRE). Originally published online on June 1, 2006. Human Reproduction 2006 21(8):2098-2102; doi:10.1093/humrep/del137  See http://tinyurl.com/6oyaof  for the article.

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