My long and winding road to motherhood

Lesley and Jon's Story...

It's been 4 years since my perception of just what a mother's love meant changed for ever, May 13th 2002, late on a Monday afternoon. A date forever etched in my brain, the day when my pregnancy naiveté dissolved in a puddle of bloody amniotic fluid as my waters broke at just over 18 ½ weeks gestation. Like most women, I was well aware of the pre 12w miscarriage risk and assumed once you safely passed that first 12w scan you went on to term and had a live baby. It wasn't like I was new to all this after all - my first pregnancy 7 years earlier had ended with the safe arrival of David. How little did I know!

Stones placed in memory of Lesley and Jon at the Sands Garden, Lichfield

Even with my scientific background I never knew the amniotic sac could rupture before you were in active labour. I was ignorant of the crucial role the amniotic fluid plays in lung development between weeks 18 - 26 and that the baby could survive in utero for many weeks without fluid. The doctors' prognosis was very poor - our chances of a live take home baby had all but gone with the amniotic fluid. The bleeding that preceded the rupture had never been that heavy, at its worst heavy spotting, and for two days this had disappeared after the large cervical polyp causing it had been removed.

However, early that morning I had passed a large clot as it restarted with a vengeance. Each morning as part of my daily checks the midwives would listen for the baby's heartbeat with the Doppler and each morning they would find it chugging away as part of me prayed for them to find it, another hoped they wouldn't as that would mean the ultimate decision had been taken from my hands. There are several major problems facing a pPROM mum as she seeks to continue the pregnancy - the main one being the ever present threat from infection. Once the sac ruptures the baby and the uterus are no longer in a sterile environment and bacteria can ascend from the vagina. Without the cushioning effect of the fluid the umbilical cord, the baby's lifeline supplying oxygen and nutrients, becomes vulnerable to the twin dangers of cord prolapse and cord compression.

In the end I succumbed to both a probable infection and cord prolapse and was advised to induce at 19 weeks 2 days. After an hour of short intense contractions the baby was born 22cm long weighing 170g. At first we were informed the baby was a boy, but 4 days later the midwife called to let us know that Jonathan, the baby boy we were grieving was in fact a little girl. A feeling of panic ensued as I was desperate to ensure the baby went to the funeral service with her name on her coffin, it was so important to me, almost a compulsion, that the name plate on the coffin had a name and didn't simply say 'Baby Currie'.

In the end we chose Lesley, a name that Iain's mum had chosen when she was carrying him as she was convinced she was having a girl. In many ways this seemed appropriate as she'd died the year after we married and was now looking after our little girl for us. Her middle name of Kathryn, a version of my own, we gave to her as a gift on her due date. In the end she was perfect and no cause for the pPROM was ever ascertained.

The following 7 months passed in a blur with the gradual erosion of hope that we'd ever be able to give David a sibling. In the end a referral to the infertility clinic, another 9 months and several tests confirmed our worst fears - as we suspected we did have fertility problems. Somewhat surprisingly it was sperm problems and not me - the last diagnosis we were expecting. The loss of hope that ensued saw us both hit rock bottom. That loss of hope after all we'd been through was particularly hard for me to live with - it made so many things seem so pointless.

I was just learning to live with it and giving thanks for my good fortune in having had David so easily without any problems when I was surprisingly pregnant again. In late 2004, after a very carefully monitored pregnancy Alasdair was born screaming - to the eternal thanks and relief of his parents. We had our miracle, our third child was here safely and we were content - we had two children to nurture and raise.

We will always feel a gap where Lesley should be in our family. I will always wonder what sort of difference having a female child would have made to our family dynamics and what sort of mother-daughter relationship we might have had. Our life had settled into a comfortable pattern of working and caring for my boys when shockingly only 8 months after I'd stopped breast-feeding I was unexpectedly pregnant for the fourth time. Despite the shock, surprise and initial worry over money we were starting to think in terms of a third living child, daring to hope that perhaps this time we would have a daughter to raise, when our hopes were once more cruelly dashed.

Five days earlier we'd clearly heard the baby's heartbeat at a routine antenatal appointment, when the consultant had decided that she would like a baseline measurement of cervix length before deciding how to proceed. Sadly, at that ultrasound check our baby was found to have no heartbeat and had probably died a day or so earlier. We were in the 17th week of the pregnancy. We now found ourselves once more discussing medical management of the end instead of discussing a plan of care for the next 20 odd weeks of pregnancy - a case of seen it done it. 48 hours after taking the tablets to start the cervix ripening process we were again attending the labour suite to give birth to a baby far too soon. Within 90 minutes the baby was born, still enclosed in the sac with the placenta attached.

Now we were on familiar ground. Once baby had been cleaned up and brought back to us, held and admired him and took photos. He was rather macerated and looked very delicate and fragile, so we took the unspoken decision not to handle him too much. This time the baby would take his final journey wrapped in a muslin square that had belonged to Alasdair and accompanied by a teddy that had originally been bought for Lesley's first Christmas.

The little touches that we'd regretted not doing for Lesley simply because we'd not known we could or how important these little things were, we made sure were done for this baby. Because I was kept in longer than expected waiting for the bleeding to subside as well as the anti-D shot to arrive Iain had gone home to pick up the boys and bring them to the hospital. As we were leaving I asked to see the baby again to say a last goodbye and David asked if he could see the baby too. So we got to spend a few minutes with our youngest child and two of his three siblings.

The long tortuous walk out of the labour suite with empty arms and shattered dreams was this time made bearable by the sight of David holding Alasdair's hand as he gently guided him along the long corridors. This time we made no guesses as to sex and patiently waited for the midwife to call once the baby's sex had been determined to see if we were grieving for Jon Alexander or Jessica Rose. After a week the call came that the baby was a boy. Now our grief had a name - Jon (a consistent favourite with his dad) and Alexander (after his dad).

Once more Iain had the task of carrying the coffin of his child into the crematorium. David carried the flowers - once again a simple bouquet of white roses to symbolise the purity of the baby we were honouring as I carried a guardian teddy bear and guided Alasdair in the short walk to the front. Two candles were lit for Lesley and Jon to symbolise the flame of life that had flickered so briefly in this world, but still shone brightly in our hearts and minds. The teddy that had kept Jon company whilst he was apart from us sat forlornly atop the coffin, arms open wide as if awaiting a cuddle. It had been replaced the day before with a teddy sent by dear friends to accompany Jon on his final journey and its twin now sat guarding the foot of the coffin. At the end of the service Jon's brothers each carried a teddy away - they now grace the shelves in the living room, important reminders of lives barely begun before they were ended.

After much thought and heart searching, we opted for a full post mortem examination - whilst there will probably be no more pregnancies (surprise or otherwise) the need to know what had happened was overwhelming. The results when we finally got them were more upsetting than expected, once more baby had been perfect - it was me that had failed once more. Jon was measuring 14 - 15 weeks gestation and had been dead for some time. Obviously this did not agree with us having heard the heartbeat at that last ante natal appointment, Iain is adamant that the heartbeat was heard but as with so many things now I'm starting to doubt that we did indeed hear anything. The placenta had been full of clots, whilst this may have been due to the baby dying sometime before it was thought that more than likely this was a significant factor in the cause of death as Jon had been developmentally normal - once again my baby had been perfect. Unfortunately, the lab had run out of blood before they could run a full screen for thrombophilias, so several more tubes were collected to be sent for testing and came back clear. However, because I was no longer pregnant when the blood was collected, the worry is that any pregnancy induced problem would not be apparent.

These days with the sensitivity of modern home pregnancy tests women are rejoicing in their happy news and making plans for the new life they're carrying at ever earlier days after conception. Never thinking that for one moment they will never see the child drawn breath or take its first step. Late miscarriage can be particularly difficult to deal with - family and friends focus on the word 'miscarriage' and form the idea that this baby is somehow 'damaged' and as we have found twice now this is not always the case. The word miscarriage conjures up something that is like a heavy period and is therefore relatively painless. What they don't realise is that you have to go through labour and give birth - not to an amorphous mass of cells but to a recognisable, fully formed baby. Albeit a small and delicate baby, but still a baby that can be held and marvelled at - very often with recognisable features inherited from mum, dad and other relatives.

Babies born still before 24 weeks gestation receive no legal acknowledgement and they are not registered. Though, many hospitals will now give the parents a certificate to acknowledge the baby's birth. No matter the gestational age of your baby when it dies, from the moment of that positive pregnancy test you harbour hopes and dreams for this new little life you have created. When these are suddenly cut short, your feelings of grief can often be very surprising in their intensity and friends and family often fail to appreciate just how life changing these experiences can be.

At Sands I've found the support I need to help me appreciate that my feelings of grief are not abnormal, they've allowed me to find my way through the difficult emotional maze of others' expectations of my experience and what I feel in reality. Coping with this second loss has in some ways been harder than the first. I know what to expect with my grief ebbing and flowing like the tide as it changes from being a small part of everyday life to a full on life swamping flood. I know there will be good days and bleak, dark days ahead as I seek to come to terms with my new normality.

Unfortunately, friends and family don't acknowledge this as a second, separate loss, but seem to roll it into the first. They assume because you've had one loss and learned to live with it that you'll cope easier this time and as a result give even less support than before. This second loss has ripped open wounds that I'd thought healed and at times, it's been hard to identify exactly what I'm grieving for the most - my forever babies, the fact that we have no real control over whether there will be another child or that once again I've failed.

There has been, and still is, a huge feeling of guilt surrounding Jon's loss, perhaps inevitable given the surprise nature of his conception, and the deep sorrow that I never really managed to celebrate and appreciate his too short existence. The significant milestone of Jon's first anniversary was as hard as expected, and I got through it with help from my Sands 'family'. Now life continues, parts of me may have gone with both Lesley and Jon, but David and Alasdair need their mum and for them I must carry on as best I can. What the future holds I can only guess at, but I hope I can face it appreciating the joys in the children I can hold whilst remembering those I can only cherish in my heart.

In time I know I will be able to go to sleep at night and not cry and that until then I should take all the time I need to learn to live with this new reality. If someone had told me at 25 I would find myself pregnant 4 times I would have laughed in their face. At that point in my life marriage and motherhood were the last things I wanted. Thanks to Lesley and Jon and the huge impact their short lives have had, I now have a much greater capacity for compassion, patience and tolerance. I also know first hand of the fragility of life, how easily it can slip away through your fingers and that above all that it should be savoured and cherished.

Lesley Kathryn 18/05/02
Jon Alexander 12/04/06

Mummy, We're Still Here.

Don't despair for we're still here,
We haven't gone away.
How could we leave when you need us so?
We're still here with you every day.

If you look around we'll be there,
Keeping you company all the while.
Look carefully now in the 'in-between'
It's where you'll see us smile.

In that 'in-between' as you fall asleep
We're there to kiss you good-night.
And as you wake we will hold your hand
In the new day's growing light.

On rainy days we'll make sure
To paint you a rainbow bright.
To let you know that come what may
It'll always turn out right.

When you're feeling sad
Just close your eyes and listen to your heart.
For that's where we are each and every day
We've never been apart.

©Marion C May 2005.
Originally written for Lesley but adapted February 2007 to include Jon