SHARED EXPERIENCES - Chapter 3 - Baby is here!

By Charlotte Fielder

- The human spirit is stronger than anything that can happen to it ~ C.C.  Scott

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How was it for you after the birth?

What did you do to adapt/cope?

How parents coped and adapted was in most cases directly linked to whether they knew before the birth.  I'm sure that doesn't come as a surprise, but those who went through the shock of discovery at the scan stage coped better than those who made the discovery when their baby was born.

There were a few notable exceptions.  These were:
· Parents who had the children later in life and were overall more accepting of the unexpected events that came their way
· Parents whose religious conviction led them to believe that they were in some way meant to have a baby with a limb deficiency, and accepted it more easily as 'God's will'

I also started to see a pattern emerge in the general positivity of parents.  It is no surprise to learn that those who adopted a more positive attitude had a better time of it overall.  I realise that might sound harsh.  Some parents had other complications and factors to take into account, which understandably rather reduced their capacity to be positive, and I think in life we just have to accept that some people are more positive than others.  Certainly the more positive amongst the respondents were more likely to embrace a wider range of coping mechanisms and use them. 

Reading and re-reading the responses, I had a strong sense that some parents were re-living the event as they wrote about it.  Their descriptions were so vivid.  Of course the ability to recall the birth and the moments immediately afterwards in such precise detail is common to the majority of women's experience of giving birth.  Childbirth is probably one of most mothers' top 'life defining' moments. 

However, most parents would probably not be able to recount what happened on day two, three and four with such amazing recall.  They would possibly be able to describe general feelings of contentment or tiredness etc.  But the arrival of a child with visible deficiencies is, for most parents, the most dramatic and disturbing day of their lives, and comes with perhaps the same stress rating as the sudden death of a loved one. 
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The way in which parents describe the shock and their sense of loss is compelling.  After all, society sets us up to believe we are going to get the 'standard issue' baby.

Everything about the pregnancy industry is geared up to the arrival of the perfect baby - just take a look at your average 'Mother & Baby' type magazine.  How many visibly disabled babies do you see?

In fact, the greeting card industry used to collude in it.  I recall addressing the Reach AGM in 2005 and describing a verse in a birth card sold in the 1960s that read:

Ten little fingers, ten little toes,
A sweet little face
And a cute button nose.
Congratulations on your Baby

I actually thought that this verse had been confined to the 'bad card' annals of history, but to my horror I was recently out choosing a birth congratulations card and I found a card with the exact same verse printed in it.  I put it back down as if it was a piece of burning coal!

But I'm not really surprised.  It's a reasonable and wholly natural expectation of parents to want a healthy child with a full set of limbs.  And it's reasonable that people should congratulate new parents on achieving it.  It just doesn't help those who have been on the other side of that expectation.  It seems as though nature is playing a cruel joke on them.

I can understand it.  I wanted it to be true for my child, desperately wanting her to be born with her full quota of digits.  Immediately after my daughter was born and the cord was being cut, I asked, 'How many hands has she got?' I didn't want history repeating itself on my watch. 

So it is totally understandable to want perfectly formed children.  Think back to times when you have talked to someone who is having a baby and have asked whether they want a boy or girl? And how many times have you heard them reply, 'We don't mind so long as it's healthy', or, even worse, 'We don't mind as long as he/she has ten fingers and ten toes'? I've had that particular line said to me, to which I replied, 'Well, my mum and dad wanted that, too!"
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So if the 'ten toes' and 'ten fingers' are the baseline requirement, then it follows that not having that requirement met is almost too much to bear in the initial hours and days following the birth of a child with limb deficiencies.  One mum wrote in her questionnaire that just a few more fingers would have been nice. 

Parents' recollections were powerful and moving as they described the whirlwind of emotions they went through.  The most prolific was shock. 

The room was silent and the entire event was shocking.  Gas and air made me laugh.  We then went silent.  When it came to announcing Liana's arrival, I only dealt with it when friends called us.  I was much better than my husband at taking the initial calls and telling people, but I also cried more.  The day we realised that our job was to accept Liana as normal and not to make allowances was a big [turning] point.

And after shock came a sense of shame.

It was such a radical shock at first - I felt ashamed, terribly sad and I blamed myself and felt that everyone was looking at me in the hospital.  It was horrific and at that time devastating, as it was so unexpected especially after ten scans had never picked this up.  My husband was angry because of this.  I wanted to hide my son's issue from everyone.  This was due to me being self conscious and afraid about what the future held for my son.

One mum, whose own baby brother had died in babyhood, felt shock, but also that there was real significance and attached deeper meaning to her baby's upper limb deficiencies.

When Robbie was born it was a huge shock and I really thought his hands were going to come out after his feet and the midwife would stick them on or they would pop out of the end of his arms.  It was a bit surreal.  However, when they placed Robbie in my arms that all disappeared.  He turned his head up to me and it was like it was my little brother looking straight at me and telling me everything was going to be OK.  He was our first little baby and we were just so glad to have him with us.

I truly believe that it was my own parents and my brother (who died at three months) that gave me the strength and courage to get through those first few weeks.  My parents lost my only brother at three months and they were really upset (for me and themselves) at their oldest daughter having her first son with no hands.  I felt I had to be strong for them and actually had a talk to myself.  I reckoned that I could fall apart and be absolutely useless to my beautiful miracle and myself, or I could make the best of things and be grateful for the miracle I was given.  I chose the latter.

My own mum recalls being on a small ward with three other new mothers.  She said the mother in the next bed didn't want her child and told her she was 'giving it up for adoption'.  My mum described the incredible situation of being in the bed next to someone who was giving away a perfectly formed child.  I looked at my mum and said, 'Well, you should have swapped!' We did laugh when we considered the bizarre situation that was played out.  There was my mum desperately wanting her child to have two hands and there was the woman in the next bed giving a two-handed child away.  But that didn't stop my parents moving quickly towards accepting their own new circumstances, however unfair they may have seemed at the time. 

In those early days, my mum resented being questioned about any medication she might have taken during the pregnancy.  I was born hot on the heels of the time when many babies were born with limb deficiencies because their mothers had taken a drug called Thalidomide for morning sickness, so the intrusive questions were understandable.  My mum said she soon realised she 'had to grow up' to cope with this new situation.  My dad, recalling those early days and how he coped, said, 'You have to be quite a strong character to accept it straightaway.'

Some parents in the questionnaires took longer to reach acceptance, and quite a few of those were incredibly hard on themselves.  They berated themselves unnecessarily for not being able to accept the situation sooner than they did.  Parents moved to acceptance at different speeds and in different ways.  One mum recalls that when her daughter was born, nothing was said and she was allowed to discover it for herself.  Having met this mum a few times and knowing what a calm and steady person she is, I think the midwife read her well and let nature take its course. 

I had my daughter at home in the early hours of the morning and the birth was smooth and easy.  I had a midwife and a trainee in attendance and nobody mentioned her hand.  They just handed her to me with her left hand out of the sheet.  I think the midwife had taken the view of 'let Mum find it'.  I wasn't really sure how to feel, but I clearly remember the trainee midwife putting her foot right in it by saying, 'At least it's a girl - she won't have to work for a living.' I was more concerned about the telling off she was going to get!

One Reach mum, who only found out at the birth, explained it was difficult to adapt during the days that followed.  She had no experience of people who had babies with disabilities and I think many other parents probably felt the same.  If only 60 babies are born a year (in the UK and Ireland) with upper limb deficiencies, then your chances of having a child with similar in the same road are pretty slim.  Not having any knowledge can be frightening. 

...because of her prematurity I was in hospital the whole time and my paediatrician told me he didn't see me smile until she was three days old.  I had never met anyone who had had a baby with anything wrong before, and although I loved her completely from the minute she was born, it took a while to see past the limbs and stop feeling pity for her.

Those who already knew that their baby was going to be born with an upper limb deficiency still had some mental adjustments to make.  Knowing is one thing but confronting the reality of the situation is another.  For some, thankfully, it was easier than they thought it would be.

Much, much better, than I'd ever expected.  She was a beautiful baby and from the moment I first saw her and held her I knew her arm didn't matter to me.  For sure I wish she had two hands, but she hasn't and I just wanted to protect her and do the best for her.

But other parents still had to perform those mental gymnastics, and they realised they had to develop a way of dealing with people and other practicalities after the birth.

As we had been prepared during the second half of pregnancy, it wasn't really an issue for our family and close friends for the first couple of months.  Aaron was a normal baby to us who cried a lot and wanted to feed all the time, so these were our main issues at that time.  The only difficult thing for me was when we met people we knew, but didn't know well enough to discuss very personal things with (e.g.  parents of our older son's friends).  I wasn't sure if we had to tell/explain or not.  For people I didn't know at all, I didn't explain anything.  I felt sometimes a bit insecure, if people were looking in the pram, and I was always prepared for an inappropriate comment, but luckily it never happened.  I think sometimes people don't even realise.  For us the best way to deal with it is to be very open (especially to family and friends).

More generally from the questionnaire it came through that part of the process of adapting and coping involved thinking about what the future was going to be like for their child.  One mum recalled how her own mother had joined in this process and imagined how the tiny baby was going to grow up to be a tall, strong rugby player, and that grandma could visualise him on the field! Such positive visualisation techniques really helped parents cope as they realised they could see bright, purposeful futures for the children no matter how serious the deficiency.  To me, it was the power of the human spirit to overcome whatever difficulties life presented jumping out of the questionnaires.

Sadly, some parents also spent time trying to recall if there was anything they did during the pregnancy which could possibly account for the limb deficiency.  My heart really went out to these mums because I miscarried twins in 2003.  I spent night after night telling myself it was because I bleached the kitchen sink and accidently inhaled some fumes.  I was convinced it was my fault I had lost them.  It took me a long time to accept that there are many reasons why some pregnancies don't go to term and that continually blaming myself wasn't going to bring them back.  The questionnaires revealed that self blame, and desperately searching for reasons is certainly a shared experience.

Well, I have to admit I went round doing everything one-handed for a while to see if I could, and I did look for reasons - even blaming it on a late night horror film about someone losing a hand and it haunting them.

Given time I managed to address the issue by coming to terms with it and facing people.  I adapted by cutting the clothing so that my child could touch his other limb, and to involve it in all normal activities.  I also looked into why this ever arose.  Was it my condition, my drugs or genetics? We came up with no solutions as to why this ever happened.  I went to a group to understand other disabilities and degrees of conditions which were far, far worse in comparison to my son's.  I cried the whole car journey home, as I was sad for the other families, but it made me realise how lucky I was to have such a beautiful child who had a brain and body which at least functioned normally.

Some respondents reported feelings of being let down by the system.  Part of coping with and adapting to what had happened involved them expressing their anger with their health care providers for not finding the deficiency during the scans.

I have also coped with getting scan paperwork looked at professionally to ensure that clinical negligence was taken against the hospital where I delivered, as ten scans were performed and nobody told me in advance of birth about my son's condition.  I believe that parents today should have the right to know.  Especially those who requested and fired many a question at consultants to check for abnormalities.  I have done this to ensure that no other family has to undertake the pain that I went through after the delivery of my son.

Well meaning comments from health professionals and relatives also caused great anguish.  At a time when people will grab at straws for a better outcome, ill-worded optimism sometimes made matters worse.

We can distinctly remember words that were meant to give us comfort but, in the midst of our shock and sorrow, sadly did not.  Emma was born with multiple internal abnormalities.  Among these, her right arm was missing, the radius bone causing the arm to be short and without a wrist.  Her fingers were bent stiff without an opening and closing function, and her thumb was hanging on a tag of skin.  So many people said, 'Don't worry, they can work miracles these days.' Our earliest response was, 'Can they, please?' But in reality the professionals did not say this, and procedures were undertaken to lengthen and straighten her forearm as much as possible, but it will never be the same as her left arm.

I have written a lot about the trauma of limb deficiency following the birth, but some children have lost their hand or hands in accidents. 

Hayley was born with both her hands and lost most of her left hand following her accident, which in itself was very traumatic, both at the time and for some considerable time afterwards.  Like other Reach members, it was the worst day of my life.

What also struck me is that, when something bad happens, there is a need to connect with your closest family.  I remember reading that soldiers dying in battle will cry out for their mothers.  In a way the need to be physically close to our kin is like a bird's homing device.  One mum described the almost epic journey she made within days of her son being born to be with her family and share her son and his condition with them. 

My husband told Dominic's brothers about his little arm just before he came home from the hospital, about 18 hours old.  As they were so young we didn't believe there was any value in telling them any earlier, but they did know before they met him.  They, too, bonded with him instantly and wanted to protect him from day one and still do today! We explained to them that the doctors would make a little hand for him when he was older and not to worry about him, just to help him where they could.  We just wanted to enjoy this beautiful baby which we were so lucky to have.  Dominic was born in London on a Friday night and the following Friday my brother was getting married in Ireland.  It was touch and go as to whether we'd make the wedding but I was very determined.  When he was three days old he got his birth cert, and at four days we left London with his brothers, aged two and four, to drive to Wales to take the ferry to Ireland and then drive to Cork - about 24 hours of travelling! We arrived in my parents' kitchen on the Thursday morning he was five and a half days old.  It was great to be home with my family and great for everyone to meet the little man.  As we introduced him to his relations young and old, we showed them his little arm, and encouraged them to touch it and feel where the limb stopped.  Rubbing his little arm is as sensitive to him as rubbing his hand - it was part of him and we didn't want any mystery or taboo about him.  Of course so many people have stories of other people who have lost a limb either by accident, illness, or by birth, and were very quick to tell us how well they were all doing.  Time and time again, we'd hear, 'Don't worry about him at all, he'll be fine'.  Once he was born safely I could listen to these stories, but when I was pregnant I couldn't.  They used to really upset me.  I think I was just so worried that the little arm was not going to be the only problem and I didn't want to hear how great other people were coping with only one hand.

The road to acceptance can be a long one and the more I talk to parents, the more I realise that when they reach the point where they are no longer angry and upset with themselves, their partners, health professionals, their family etc, and finally accept that things are as they are - then they start to feel optimistic and often blessed for the child they have.

In the process of writing of this book, I have spoken to many parents at Reach AGMs - often in quick conversations in corridors; often in the bar later on in the evening, when we all tend to be a bit more reflective.  One mum spoke to me for a while about how her outlook had changed from one of great denial to one of positive acceptance. 

It took me 12-14 months to admit to myself I was OK with it.

She described how previously she would walk around shops and look at other babies playing with their hands.  She said she became obsessed with it and then felt bad.  As she explained it, I could hear in her voice that this was history.  She almost spoke as if it was some other woman at a point far back in time.

It was rather uplifting that parents who had always considered themselves not to be
'life's copers', and would never have imagined themselves being able to respond to and deal with visible disability, described their amazement at how they had successfully met the challenge of accepting the situation and their child.  How fantastic to hear that.