When I married in September 2001, at age 34, I was eager to begin trying for a family right away. After about 5 months of failing to become pregnant (and I admit a little white lie to my GP concerning the length of time we had been trying to conceive) we embarked on the journey of fertility tests which revealed an element of male factor infertility. This, we were told, would make natural conception very difficult and we were advised to take the IVF route using intra cytoplasmic sperm injection (ICSI). This all came as rather a shock. Being all too aware of the relatively low success rate of IVF procedures, in addition to the cost, the horrible possibility of never having a family started to dawn on me. At the same time, I was pleased to have at last got to the bottom of my inability to fall pregnant and felt that I was back in ‘control’.
We did our first cycle of ICSI in September 2002. Daily hormone injections, scans and other uncomfortable procedures followed, but on the whole the process went relatively smoothly with nine eggs collected, of which 8 fertilised. On the day of embryo transfer, some of the embryos had perished and so three good quality embryos were put back (as the law allowed at that time) and two frozen. Unfortunately before the end of the usual two-week wait, my period heralded the failed cycle. I was distraught. I knew the odds were against us, but as every stage of the process had seemed to go so well I was convinced it would work. We eventually had a follow up appointment at the hospital, and were advised that based on the number of eggs collected and quality of the resulting embryos a subsequent cycle should be considered. We agreed to this for the future, but in the meantime also arranged for the remaining two frozen embryos to be thawed and transferred in January 2003.
We were told that the freezing and defrosting of frozen embryos was a very invasive procedure, and as a result the chances of a pregnancy following such a cycle were even further reduced. Following the embryo transfer, the two-week wait commenced, albeit that my expectations of getting pregnant with a frozen embryo were much reduced. At the end of the two-week wait, I was going to a concert at the Barbican with friends to listen to a performance of Haydn’s Nelson Mass. We all went out for dinner before the start of the performance and, thankfully as it turned out, we were on the front row. Shortly after the beginning of the performance I felt extremely ill, and rushed from the theatre to the nearest toilet. Needless to say I watched the rest of the performance on the small TVs in the bar area! I assumed that something had disagreed with me, but at the same time in view of the timing, my thoughts were full of anxious excitement.
I awoke the next morning and, with the usual trepidation, went to the toilet. This time I could not wait any longer and decided to take a pregnancy test. When I looked at the stick the results were fairly unequivocal! There was a big bright blue cross indicating I was pregnant. The sheer elation was overwhelming. I did a quick thank you to God and rushed into the bedroom to tell my husband Peter. Of course assuming that our goal had been achieved, on that morning we naively told our parents immediately.
A scan at 6 weeks revealed a fetal sack with a strong beating heart. We were relieved and delighted. Scans at 8 and 12 weeks showed nothing unusual. The Nuchal test indicated that the chances of the baby having Down’s Syndrome were low, and hence further invasive diagnostic testing on the baby was not considered. Everything at this stage appeared to be in order, and we decided the time had come to tell all friends and family. I still have copies of everyone’s messages of congratulations, which were all the more sweet, as many of our friends knew the troubles we’d had to achieve this pregnancy.
Life continued as normal, but my mind was excitedly wandering onto baby related matters. I would sit on the train to work sucking my Cherry Drops (to alleviate the nausea) continually fantasising about my ever expanding stomach, how cute my baby was going to be and how great it would be to be away from work on maternity leave for a whole year! A colleague and friend was also pregnant at the same time as me with an IVF baby, and it was great to swap notes on symptoms and maternity clothes. My brother in law and his wife sent us a book of baby names that we spent an evening scanning through. Boy’s names that we both liked eluded us, but Peter picked out the name Abigail for a girl, which I also liked.
The next hospital appointment was the 20-week anomaly scan, which was on 11th June 2003. Peter and I went to work in the morning as usual and then left early for the appointment. The sonographer got the scan underway and remarked that the placenta was low lying, and would need to be checked again at 28 weeks. All other organs were then checked. Although I was unaware at the time, Peter suspected there might be a problem when the sonographer was looking at the baby’s kidneys, as she kept looking at different views and cross sections repeatedly. At the end of the scan the sonographer informed us that she was going to refer us to St George’s Fetal Medicine Unit at Tooting for a more detailed scan, as the baby’s kidneys appeared to be ‘large’. I asked what she meant by this to which she replied that they were twice as big as they should be (this later turned out to be a gross understatement).
I probably bombarded her with a few other questions, but she seemed to leave the room rather quickly and told us that a midwife would be in to talk to us. We waited in that room for what seemed like hours just staring at each other. My heart was racing, and I had that awful sick feeling at the back of my throat. Eventually a midwife came in and was very vague as to what was wrong with the baby, but she told us that an emergency appointment had been made for us at St George’s the following morning at 9am. Now I knew this was serious. She gave me my notes and we set off home. In the car on the way I read the sonographer’s notes where she had written that the baby had ‘suspected infantile polycystic kidneys’. Armed with this vital medical information, I immediately jumped onto the Internet to understand what this was and what could be done about it. To my horror I found out that this was an autosomal recessive disorder, that my baby would not survive and to make matters worse there was a 1 in 4 chance of it affecting a subsequent pregnancy. If the sonographer was right, my world had just fallen apart. The baby I had longed for was going to die and I would face the same trauma with any subsequent pregnancy if I could ever get pregnant again.
I said so many prayers that night as I went to bed, but I knew in the pit of my stomach that the next day was not going to bring some turn around miracle to change the outcome. We set off early the next morning, and had an agonising wait for half an hour until we were called into the scan room. We were scanned extensively by very sophisticated equipment. At the end of the exam we were told very gently that the baby had indeed got grossly enlarged kidneys, the precise cause of which could not be determined unless more invasive diagnostic tests were conducted. As well as enlarged kidneys, the posterior horns of the lateral ventricles in the brain were at the upper limit of normal, and this suggested the possibility of some sort of chromosomal abnormality. We were sent into a private room with a box of tissues to consider our options. We were offered amniocentesis to ascertain whether the enlarged organs were as a result of some other chromosomal abnormality. However, we were also advised that no matter what the outcome of an amnio, with the kidneys already being so large they would prevent the proper development of the lungs, and the baby would be unlikely to survive if the pregnancy were to go full term.
I remember sitting in that room feeling shocked and frightened, but knowing that the only course of action was to terminate the pregnancy as soon as possible. I simply could not bear to spend any longer than was necessary feeling my baby move and wriggle inside me as though everything was fine, whilst knowing that its tiny body would never be able to sustain life outside of the womb. I remember looking across at Peter in this room, and his face was just creased up with grief. Having told the specialist of our decision, she immediately arranged for us to see a consultant at Kingston hospital who made all the arrangements for us to terminate the pregnancy. As I was 22 weeks pregnant I was told I had to deliver the baby, as a C-section this early in the pregnancy would apparently have affected my chances of having another child. This frightened me immensely but more than that I was angry; why I should I be made to suffer the pain of giving birth only to be presented with a life-less child?
How quickly your life can change from being one of sheer joy and excitement, to a state of utter desperation and sadness. We returned home and gave everyone the bad news.
We went to the maternity ward of the hospital the next day, and were given the usual pessaries to soften the cervix two days before labour would be induced. I always remember the nurse confirming with me that I was fully aware of what I was doing. If only she knew the half of it. The next 48 hours were spent on practicalities; cancelling holidays, completing insurance forms, getting shopping in. We went into the hospital on the Saturday morning and started what turned out to be a very long 24 hours. Abigail finally arrived at 6:50am on the following Sunday morning, ironically Father’s Day. Throughout the night, and right up to her delivery, the most wonderful midwife, Veronica, attended us to. I think that Veronica took our case to heart, as she was herself awaiting IVF treatment. She very carefully and gently prepared us for what to expect when our baby arrived, and dealt with all our wishes regarding a visit during the night by the hospital chaplain.
When Abigail arrived, she was no longer breathing but otherwise looked like a very tiny, perfect baby. Her hands were so dainty, and as I held one of them her fingers curled around my finger as though she was holding onto me. It was bizarre because although she was dead, we were both looking at her and commenting on her characteristics just as though nothing were wrong. We passed her back and forth between us, really delaying the moment when we would have to say goodbye. In retrospect, now I am glad that I had the experience of delivering Abigail, holding her, looking at her and just being with her. It was the only thing that I could do for her as her mother.
The chaplain came back to see us. He blessed Abigail and said some prayers. She was wrapped in a little green blanket, placed in a tiny basket, and her picture taken for us. Eventually it was time for us to leave the hospital, and our baby daughter. I cannot describe the feeling as we walked out of that maternity ward empty handed, so many hopes destroyed and feeling so eaten up by loss that I felt almost numb. I remember the matron telling us to ‘be kind to each other’. My broken heart was making my whole body hurt so much that the symptoms of chickenpox, which appeared the day after I got home largely, passed me by.
My husband was kind to me. It is a well-known cliché that events like this can either make or break a relationship. I can only describe Peter as my rock during this period. Everything he did was with me in mind, probably to the detriment of his own time to grieve.
The following weeks were the most awful of my life; the feelings of total shock, and emptiness were overwhelming. Returning to work was made more difficult, as I seemed to be surrounded by people who were either pregnant or trying. I found relationships with close friends and family very difficult; no one really knows what to say to you, but everyone wants to try and make the pain go away. The only thing that I thought would make me feel better was to get pregnant again.
Just when I thought I could cry no more tears, we had to arrange the funeral. Sitting in the funeral parlour choosing a casket and making arrangements for my daughter’s funeral was gut wrenching. Consumed with grief, I literally dissolved into tears and could hardly speak. We chose to spend some time with Abigail one afternoon in the undertaker’s chapel of rest. We both held her casket tightly to us, in the hopes that she would somehow feel how desperately we wanted to hug her. We asked the undertakers to place a picture of us inside her casket, and also my old favourite childhood doll ‘Bitsy’. At least she would have something of us with her always. Just myself, Peter and both of our sets of parents attended the funeral itself. A simple, but moving sermon was given by our local vicar at the time, based on the story of ‘Water Bugs and Dragonflies’ by Doris Stickney. This story had been written originally to explain the death of a five-year-old child to neighbourhood children. Abigail was buried under an oak tree, near to some other children in our local village cemetery. I know her spirit has moved on elsewhere, but it is still comforting for me to have a place to go to which just belongs to her.
The post mortem confirmed my worst fears and found that Abigail had lethal, bilateral polycystic renal disease, facial dysmorphism and fatty change in the liver, the skeletal muscle and heart. These results, although not entirely conclusive, led the pathologist to suggest that the underlying problem with Abigail was more likely to be an in-born metabolic abnormality, namely multiple acyl CoA dehydrogenase deficiency (formally known as glutaric aciduria type 2). This abnormality is fatal in the neo-natal period when it presents with severe renal cystic disease. This very rare disease has an autosomal recessive pattern of inheritance, which means that 1 in every 4 pregnancies, could result in a similarly affected child. We were referred back to St George’s for genetic counselling.
The geneticist we saw outlined the various pre-natal options to us in detecting the problem early in any subsequent pregnancy. This essentially involved chorionic villus sampling (“CVS”) at 11 weeks, from which samples would be taken from the placental tissue and sent for further special enzyme testing in a specialist laboratory in Sheffield. This testing would be conducted in tandem with detailed scans at the FMU. Whilst confirming the 1 in 4 reoccurrence probability, the geneticist did try and lighten the mood by telling us that she had known plenty of families with autosomal recessive disorders who had gone on to have very healthy children. On this note we were essentially sent away to go and get pregnant.
Getting pregnant again took some doing, largely I believe because my body and mind needed time to accept what had happened. Three unsuccessful cycles of ICSI followed from October 2003 to June 2004, each one made worse by a heightened sense of loss. The anniversary of Abigail’s death seemed in a way to mark the start of a new phase, for me at least. I had been dreading this day, but shortly thereafter I felt more positive that things would work out. In July 2004 I had a frozen embryo transfer from embryos left over from the third failed cycle. The transfer took place on 26th July, my sister’s birthday. Two weeks later I took a pregnancy test, and found out I was once again pregnant. Of course our immediate delight had to be tempered until October 31st when, after the CVS and a very long and stressful wait, we were told by St George’s that the genetic tests were clear. That night I allowed myself half a glass of well earned champagne to go with my fish and chips!
Isabel was born on 11 April 2005, and despite more hurdles, Conor followed after her on 18 January 2007. Looking at the miracle of Isabel and Conor each day, it is difficult for me not to be continually reminded of Abigail. People have suggested to me that it must be easier to accept her death, now that I have two healthy children. In a way this has to be true but it also makes me incredibly sad, as experiencing the joy of Isabel and Conor I am more acutely aware of what I have missed out on with Abigail. With Abigail I shared the happiness of being pregnant and of feeling her growing inside me. Those same feelings are the ones that made me yearn even more for another child and are ultimately what drove me on, despite everything, to have Isabel and Conor.
I have written this piece primarily to honour my daughter Abigail, but also with the wish that it provides comfort, hope and inspiration to others facing similar circumstances.