SHARED EXPERIENCES - Chapter 2 - Before the birth

By Charlotte Fielder


Babies are such a nice way to start people ~ Don Herrold

If you knew about your child's limb deficiency before your child was born,
what situations arose and how did you deal with them?

Charlotte Fielder - Shared Experiences

About half of the respondents found out about their baby's limb deficiency
during the pregnancy.  Despite their concerns about other possible problems,
they felt that prior knowledge gave them time to get used to the idea and
prepare.  Interestingly, those parents who found out after their baby was
born were glad they didn't know before, as they felt that prior knowledge
would have caused them undue worry!

I think this says a great deal about our human abilities to take in and deal
with situations as they arise, and to try and make the best of them.  There
were no great outpourings of either 'if only I had known' or 'knowing was
the worst thing'. 

Those who found out before the birth

One thing became quite clear: some of the worst case scenarios presented by
health professionals considerably added to the despair felt from the immense
shock of discovery that parents were hurriedly trying to come to terms with.
Some parents were given too much information in too short a time frame and
were expected to assimilate it too quickly.  They then had to make swift
decisions about how they wished to proceed. 

They were offered everything from more tests to termination.

We were told Adam was missing his left arm below the elbow at my 20-week
scan.  When the radiographer noticed it, we were immediately taken to the
special ante-natal unit at Queen Charlotte's (which is the largest maternity
hospital in West London).  I was told there was every possibility that the
baby might have a serious condition which meant that either my pregnancy
would not go to term, or the baby would not survive long after birth.  They
suggested an 'amnio' and I was given ten minutes to think about it. 

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The above respondent later described that, if there was a more serious
condition present then the hospital were effectively offering a termination,
and this was a huge shock.  She had her amniocentesis 15 minutes later and
then spent the weekend worrying. 

For a long time I did feel as if the baby and I were science experiments.  I
was even sent to a specialist in club feet! At 30 weeks I asked them to stop
testing me.  I said to a midwife that I was not sure what on earth they were
going to discover at that stage that would make any difference - I was sure
my baby was fine! She said 'it was only terminations for social reasons
that had to take place up to 24 weeks'.  This still horrifies me when I think
about it or relay this story.

Aaron's parents also found out about their son's missing hand at the 20-week
scan and, in common with other parents, hit the Internet straightaway in
their thirst for information.

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We found out about Aaron's missing hand during the 20-week scan.  It was
obviously a huge shock, as it came out of the blue.  Almost the first thing
we did was to check the Internet for 'missing hand', and found Reach within
an hour or so after the scan result.  We tried to find as much information as
possible and signed up with Reach even before Aaron was born.  It was a great
support just to know that there are other families who have to deal with the
same situation, and especially to read about all the happy children and how
well they can cope with everything.  It obviously took some time to accept
the fact that we wouldn't be able to give Aaron the other hand, and
unfortunately I couldn't really enjoy the rest of the pregnancy, as we were
worried that something else might be wrong.  So we did some special heart
checks and had another special scan in Germany where they made a very
detailed scan of everything.  We had a CD full of pictures especially of the
'little hand' so we could adjust a bit better.  Once we were able, we
informed everybody in the family and close friends, so that they could
prepare.  It wasn't easy at that time but it was then much easier once Aaron
was born as everybody was happy to see him and wasn't surprised or shocked. 

We found out at our 20-week scan that Rosie (now two and a half) would be
missing her right arm from below the elbow.  Yes, it was a great shock and
looking back it was probably the worst day of my life! But I am really glad
we did know; we were so prepared for when she was born.  We had found Reach,
had met a couple of local Reach children and really got our heads around
things.  Yes, we did have the extra worry and it didn't really matter how
much everyone reassured us that everything else would be OK.  There was
always that niggling feeling that something else might be wrong.  But
thankfully it wasn't, and the birth was a great experience, as I had asked a
friend of mine who is a midwife to deliver Rosie and had given her lots of
info on Reach, so she was as prepared as we were.

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Knowing about it when I was pregnant was brilliant.  After he was born we
could just concentrate on how wonderful he was rather than having to deal
with the shock and all the questions that come with the discovery.  By the
time he was born we had stopped blaming ourselves and had got on with
enjoying him.  The pregnancy was long and very stressful worrying about
everything.  Often I did question whether I was better off knowing or not.  At
the time I was very emotional about it and really scared, but once he was
born I was really glad that I did know, as I could just enjoy our first
meeting!

This mum found out the news on a Friday afternoon.  By the time the
sonographer had taken the scans for the fourth time...  just to be sure...  they
had a view of Dominic with his arms stretched up over his head.  So they were
really in no doubt what the problem was. 

Yes, fortunately for me I did know and it was very early, too.  Dominic's
little arm was discovered at my 12-week antenatal scan.  It was a tremendous
shock, as it was not something my husband or I had ever envisaged would be
discovered.  If the sonographer had told me the pregnancy was no longer
viable I was prepared for that, but not that he had no lower right arm or
hand.

Amanda's mum found out at her 20-week scan and, even though she is a health
professional herself, found it hard to get her head around all the
practicalities.

We discovered Amanda was missing her left hand and a third of her left
forearm at the routine anomaly scan at about 20 weeks.  She was our second
child and at the time the news was devastating.  I think I cried for a week.
Lots of questions kept going through my mind - what will the arm look like?
I just couldn't visualise it.  How will she be able to feed herself, cut
food, how will she be able to drink from a cup as a baby? How will she ever
be able to wear sleeveless tops and ball gowns, let alone play sport, drive
a car or have a normal childhood? Hundreds of questions that now I wouldn't
unduly worry about.  At the time I was working up at the hospital with many
paediatricians and medics, but no one could give me any answers as to what
was the cause.  I was desperate to find out why.

One of our biggest worries was, what if there were any other problems, and,
if so, how would that affect our family? We decided to opt for an
amniocentesis to gain more information.  Waiting for the results to come back
was the longest ten days of my life.  The results of the amniocentesis were
normal, which was a great relief as I knew for me the only way was forward.
I still feel quite cross and saddened really about the way we were treated
by hospital staff during those weeks after we discovered Amanda's arm.  From
the initial 'discovery' on the scan we were ushered into a separate room and
asked to wait to see the Genetic Counsellor.  She knew absolutely nothing
about hand or arm deficiencies and could throw no light on the situation.
Nobody told us about Reach and our only referral was to see a plastic
surgeon when Amanda was six weeks old.

Luckily, we did discover Reach through searching on the Internet.  Knowing
there were others out there who knew what we were going through, to know
that there was a charity to help, providing literature/booklets to read,
someone to speak to, was incredibly reassuring and supportive.
Many of the respondents described a similar chain of events after they found
out, characterised as follows:

* Shock of discovery
* Emotional pain & despair
* Realisation that they had choices (spoken or otherwise} to carry on
with the pregnancy or not
* Acceptance of this unplanned situation
* Searching for information - the need to find out as much as possible
about upper limb deficiency was keenly felt, and most parents found the
Reach website within a very short time
* Worry and concerns about the health of their baby, other conditions
and what the future held
* Deciding what to do

Once parents had reached a level of acceptance, some felt the need to share
the news with their family and friends.  This was a significant step towards
normality. 

Some parents shared the news because they wanted to prepare family and
friends.

I also made most people aware about Rosie's arm before she was born so when
she did arrive it wasn't a shock for anyone.

Others told their families after they had learnt more about upper limb
deficiency, and continued to keep people updated throughout the pregnancy.
We told our families about our discovery when we told them about the
pregnancy at 13 weeks.  At that stage we had done our own research to be able
to explain to them what we knew and what our fears were.  We kept them posted
at each stage, as we had each scan and after we visited the rehab clinic.  It
helped to have people to talk to.  It was a long pregnancy for all of us, but
when he was born they, too, were delighted that everything else was normal
and somehow it helped to put it in perspective.

Those who found out when their baby was born

Those who found out about their baby's limb deficiency after the birth
reported on how they felt about not knowing.  Most respondents were 'pleased'
that they didn't know, despite registering greater distress after the birth
than those who did.

We didn't know beforehand that Robbie was going to be born without any
hands.  To be honest I'm glad we didn't in a way, as I would have spent the
remainder of the pregnancy worried sick.

One mum realised that the limb deficiency could have been detected during a
late scan.
I didn't know until Sophie was born.  They had recently scanned me as my
waters broke at 31 weeks (she was born at 32), and in retrospect they said
it was clearly visible on the scan, but their operators were only required
to count the limbs, not look at the 'quality' of them.  As a result they said
they would change their policy.  Actually I think I was better off not
knowing.

The mum quoted below explained she had a stress-free pregnancy.  Even if the
missing hand had been seen, they may not have noticed that there was also
something wrong with her other hand which was fused as a fist.  She thinks
she might have invested false hope in thinking 'at least she has one good
hand'.

I didn't know - although a subsequent look at the scan photo [shows it is]
shockingly obvious.  However, we are both glad that we didn't know due to the
lack of additional worry during pregnancy.

One mum had scares throughout her pregnancy and already had some concern
that all was not well.
I didn't know before she was born anything was wrong, although I did nearly
lose her four times, so had some fears.

My own dad explained to me that during the 1960s, it was very unusual for
fathers to be present at the birth.  The role of the father was to take his
wife into hospital when labour started and then telephone the labour ward
some hours later to ask if it was a boy or a girl!
My dad was a London taxi driver at the time, so on that particular July
morning in 1963, he was trying to pick up fares in London's West End.  He
spent the day wondering what was going on.  At the time recommended to him to
call the ward, he parked up near Victoria and phoned the West Middlesex
Hospital in Isleworth from one of those old red phone boxes.  My dad was put
on to the ward sister, who in quite a matter of fact way told him that all
was not well and that I had been born with a missing hand.

My dad recalls driving from Victoria to Isleworth like a 'mad thing'.  He
told me he stopped very near the hospital to buy some orange squash for my
mum, but his head was so full of what he had been told that he went to leave
without paying.  The shopkeeper and two elderly female customers shouted
after him.  My dad said he just stood there looking at them and then burst
into tears.  So here was my dad, the big old ex Royal Marine, crying in
front of strangers.  I felt my eyes prickle with tears as he told me.  I asked
him what he'd said by way of explanation.  He said he couldn't really say
anything.  He'd just repeated, 'My wife, my wife...' and then left the shop
in a daze.

When he arrived at the maternity unit, the ward sister took him to a private
room to see me in my cot.  She repeated what she had told him earlier, for
good measure adding that there might be further 'mental problems'. 

My dad said this frightened him but at that very point he 'got to grips'
with the reality of the situation and told her, 'She's comes to a good
home.' He then picked me up and carried me to my mum.

My mum took up the story and told me that she had never imagined she would
have anything other than a perfect baby.  Anything different had not even
entered her head.  She explained she was 23 years old when had me.  She had
married my dad two years before and moved from Birmingham to London to start
married life in a small bedsit in Paddington.
My mum had been working as a nursery nurse at a council-run day nursery in a
run-down part of Paddington, and all she wanted was to move further out of
London and have her own front door and a baby.  She had no close family
within a hundred miles and had been orphaned as a child, so had a keen
desire to create her own family unit.
My mum went into labour near the anniversary of her own mother's death, an
anniversary that held deep significance for her, and at some level she had
connected my birth with that difficult event in her life.  Having a much
wanted baby was deeply symbolic for her. 

She described how after she had given birth, 'bells started ringing and
doctors rushed in'.  She talked about how she became hysterical and 'screamed
the place down'.  Not having my dad there greatly added to her upset and she
struggled to compose herself.  Seeing him carry me in was a huge relief to
her.

For another mum, the fact that her child survived his birth outweighed
concerns about his missing hand. 

I was relieved that Jonathan was alive and not too concerned that he did not
have a hand.  Jonathan is one of twins and the second twin to be born.  My
contractions stopped and there was concern that they would have to deliver
Jonathan by Caesarean section, but after 20 minutes he was delivered to the
relief of everyone.  However, the room went very quiet and I thought he had
died and panicked.  The nurse brought Jonathan to me and showed me that he
was alive, but only had one hand.  I was relieved.  One of the nurses, who had
a son with exactly the same missing hand, was a tower of support.
This mum's description of quite a traumatic birth with the fear that the
second baby had been born dead, demonstrates the human ability to recognise
that there could have been a worse outcome than a missing limb.  Time and
time again through researching this book I encountered parents who, whilst
expressing their sadness that their child had been born with limb
deficiency, immediately acknowledged that things could have been worse,
followed by conveying their gratitude that things were not.