Nell, and how this blog began

Several new visitors to this blog have asked to be put in the picture about my experience with Nell. Rather than keep on repeating myself, which would be extremely boring for those of you who've read all about it in the Sunday Times before, I'm posting this here now and it'll be kept in the archives.

So if you wonder how I came to be in this boat, you could start by reading the piece below. It's ostensibly about abortion (no letters about this please: I'm personally not mad keen, but I also believe in a woman's right to choose, and I don't want to enter into a debate about termination here), but it was also the first time I wrote about Nell's illness - in fact I wrote the article four days before her open-heart surgery.

If you want more, you can read this - a column I wrote about CBeebies and which touched on special needs. The response to it was vast, so I wrote this, and here we are today. If you're after a straightforward, blow-by-blow account of what happened to us with Nell - just the facts, and no opinions, you can read a piece I wrote for The Daily Telegraph last winter here . (It is accompanied by an especially gruesome triple-chinned picture of me - I'd just like to point out that I've since lost four stone).

Yes, I know - the photograph I've used is hardcore. It's of Nell a few days after surgery. My hands have gone clammy looking at it again. But this blog is trying to tell it like it is, and that is how it was.

From The Sunday Times, 26 April 2004

Unfashionably, I am not particularly pro-choice. Abortion is a subject I normally button my lip about: saying that you are pro-life is considered both illiberal and anti-feminist, if not just plain anti-women -- to say nothing of rabidly, grotesquely, red-neckishly right wing. So I keep quiet about the fact that I believe with all my heart (and what passes for my brain) that life starts at the moment of conception. This seems to me to be simple biological truth. Ergo, a dead baby is a dead baby, whether it is a six week or 20 week old ‘foetus’. I understand and accept that this may be a minority view, though nothing will persuade me to believe that the majority of people feel it is in any way right to kill, as is currently legal, a 24-week old baby  -- one that sucks its thumb, kicks its legs, smiles to itself, hiccups.

I feel so strongly and categorically about the subject that piping up only leads to the more unpleasant kind of arguments. Religious persuasion is usually invoked (I am a semi-lapsed Catholic who uses contraception, but I would be pro-life, I think, regardless of faith or the lack of it). However: abortion is in the news, thanks to one being screened on Channel 4 last week as part of the documentary My Foetus. And so here goes.

Eleven weeks ago, I gave birth to a lovely little daughter. On Wednesday morning, she will be having open-heart surgery to correct a congenital condition called truncus arteriosus, aka common arterial trunk: her pulmonary artery and aorta are conjoined. Being told, as we were when Nell was one day old, that your baby has a serious and life-threatening heart defect is an experience so brutally devastating that I cannot adequately describe it in words.

Nell has common arterial trunk because of a chromosomal malfunction called 22q deletion -- bits of genetic material have fallen off the 22nd chromosome. She could, in theory, be pretty badly handicapped: there are a possible 180 symptoms of the ‘syndrome’, including heart defects. So far, thank God, our beautiful girl has shown no sign of any of the really serious ones, aside from her heart condition -- but since she’s only tiny, that doesn’t mean we’re out of the woods by any stretch.

I am 38, and as a 38-year-old I was scanned repeatedly throughout my pregnancy. Everything was, as my obstetrician put it, ‘boringly normal’. Nell’s heart has four chambers and fully functioning valves -- that’s all the scan can see. I had a nuchal fold test to determine the baby’s chances of having Downs’ Syndrome: it came back as a 1 in 1600 chance. Pretty remote, so I didn’t have an amniocentesis -- it seemed pointless and pointlessly invasive, given that I would not abort a child because it had Downs’. If I had had the test, though, it would have picked up the chromosomal abnormality -- and since this is often indicative of heart defects, my boyfriend and I would perhaps have known about this in advance also.

Imagine thinking you are carrying a healthy baby and being told that, actually, she may have 180 diverse handicaps and a life-threatening heart condition. What would you do? I like to think that I would have brushed off any suggestion of a termination at the onset. But I don’t know: it is possible that I would have performed a quick ideological U-turn and yelled, or sobbed, for the abortionist. Mercifully, this was never an option: we didn’t know anything was wrong.

The only point at which I waver in my unwavering stance on abortion is in the case of babies born so severely handicapped that, we imagine, their life will barely be ‘worth living’. Since having Nell, and joining e-mail groups and discussion boards, I have changed the greater part of my mind: what my boyfriend and I are going through is a picnic compared to what some families go through. And their children are happy -- I’ve looked at their photographs and seen them wearing party hats on their birthdays, or playing in the garden, beaming with joy. A beam of joy is a beam of joy, no matter how sick you are. Some of these children have severe learning difficulties, some have serious physical anomalies, one or two are so ill that it hurts your heart and completely does your head in to look at them. But they all have one thing in common: they are alive, and enjoying their life, and, above all, they are all loved. Who are we to say what does or does not constitute a life ‘worth living’? Should all these children have been hoovered out and ended up in some hospital bin? Really? And what do you do if your perfect child is horribly burnt or is involved in a hideous car crash when they’re ten years old? Do you quietly dig a hole in the garden because, suddenly, their life is no longer ‘worth living’ either?

When I was in my late teens and early twenties and militantly pro-choice -- a woman’s right ‘to choose,’ etc -- having abortions was in some quarters seen as a badge of, if not quite honour, then a commendable, almost sexy kind of feminist bad girl-hood. As a reasonably bad girl myself, I remember feeling left out -- how insane and puerile that seems now -- because I managed to have sex and not get pregnant. My friends referred to their terminations as ‘abos’, thought of themselves as rather rock n roll, and they liked airing the old chestnut that terminating their baby’s life was as easy, in all senses, as having a tooth out. (It has been my unhappy experience to escort two women to the abortion clinic just off Warren St in London, friendship being stronger than moral conviction. One fainted straight afterwards; the other cried before, during and after, and every day for the next six months. I’ll never forget seeing the other half-dozen women in the waiting room, waiting to go upstairs and have their baby removed and thrown away. In both my friends’ cases the abortion was chosen because, well, you know, having a baby wasn’t terribly convenient at that point in time.)

My daughter is the most wonderful thing to have happened to my boyfriend and I. She has fat little cheeks and huge blue eyes and tufts of black hair and every time she smiles her gummy smile I am so overwhelmed that I just stand there grinning back and wanting to explode with love. It breaks my heart to think that there are people who abort children like her, and it breaks my heart to think that I may once have been one of them.

There is no point in sitting on the fence on this subject. Like everybody, I try to see that morality is flexible, personal, that everything is a matter of choice. But if you believe something is wrong for you and wrong in general then you might as well call what you hold true a moral principle. Tony Blair once told the late Cardinal Winning that though he was personally opposed to abortion, he didn’t want to impose that view on others.  Winning couldn’t believe his ears: ‘On what other policies do you apply such a logic?’ he asked. Winning thought Blair fence-sitting and shallow, and we might all be guilty of such fence-sitting when forced to address this most emotional of subjects. But let me just tell you: my baby smiles at us and the sun comes out. She could have ended up as bits of human tissue in a pail of water, like the baby terminated in My Foetus. You might take the view that the thing in the bowl is merely a collection of cells -- but surely every intelligent person knows in their heart that this is ethical flim-flam. Do what you will with your pregnancy -- I am not calling for the criminalisation of abortion -- but have the moral courage to clearly understand what it is that you are doing.

I have spent my life listening to women voicing their right to choose, and I’ve supported them often in that choice. But I want to call for another right: the right to name the thing lying in the bowl. It is the same thing as the one lying downstairs in a cot. It is a baby.

Comments

[Butty]

I have son with CHDs , he is 6 year old now and has undergo surgery 2 year ago.

[Gemma Samuel]

I am 33 years old. My son was born with Congenital Toxoplasmosis (a parasite which you get from contact with cat faeces during the pregnancy and is passed to the foetus with damaging effect). My pregancy scans and checks were all ''normal''. I loved being pregnant.. He came 6 weeks early. He has a severe brain injury, hydrocephalus and a VP shunt, has seizures, microcephaly, low vision and developmental delay. We only found out when he was 3 weeks old. He is our first baby. He was 6 weeks premature. Having gone from shock, feeling like my guts had been wripped from me, total despair, anger and great sadness and many tears, we now find ourselves with a darling little boy who smiles, rolls, tries to sit and stand determinedly, chirps his own little language, loves toys, sparkly things, cuddles and is the absolute apple of our eye. He now has a feeding tube (G tube) as of 3 weeks ago , a shunt and needs several medicines on a daily basis to manage his seizures and treat the toxoplasmosis parasite. The reason I'm writing this that he truly brings us so much happiness, laughter and joy. We of course want the best for him and worry a lot for him, but wouldn't change him for the world either. It has been a tough year with a few hospital admissions and 4 operations and hundreds of medical appointments and weekly therapies but he is truly my reason for living. I love the way he smells, the way he smiles, the way he checks people out by feeling their faces and his infectious smile and sparkling eyes and the way he loves books. I am totally in love. I can also say that he is the happiest little person and really enjoys life. He has made us re-evaluate our lives and appreciate what really matters in life. We don't know what is ahead but I pray to always see the best in him and help him face all the challenges and opportunities that are ahead for him. I have slowly learnt to make time for myself too - counselling, yoga and acupuncture have all helped me along the way and allow me to be a better mother to him. We have been overwhelmed too by all the love and care and time he is shown by others - family friends and health professionals. He seems to carry an infectious light that draws people to him. He is the best gift of all. We hope to go on and have other children but I can't imagine the journey with other children will be quite as intense, hard yet incredible and miraculous. I am glad not to have had the choice to terminate the pregnancy. He is a real treasure and I love him to bits. His first birthday this year coming will be a celebration of his life, survival and fight and all the happiness he has brought us.

[poppy vaughan]

In 2003 I gave birth to Rufus, an adorable son who was born 9 weeks early. The nuchal scan at 12 weeks gave us a high probability of something being wrong - I had a CVS and it was normal, which lowered the probability dramatically. Like India my husband and I had decided that we wouldn't terminate the pregnancy if our baby turned out have Down's syndrome. However if he had a syndrome that was "incompatible with life" then we probably wouldn't continue with the pregnancy - we didn't want to bring a child into the world to suffer and die.

In the end, despite our very best intentions that is exactly what happened. Despite the post CVS`low probability that he had anything the matter, complications at 28 weeks suggested to the drs that he had Noonan's Syndrome. Like Downs this is a broad spectrum disorder and it is perfectly possible to have a reasonable quality of life. So although we were shocked at the diagnosis there was no way we were going to terminate the pregnancy - not that it was legally an option at this late stage. Rufus was born with a minor heart and kidney problems. At 34 weeks the cardiologist diagnosed hypertrophic cardiomyopathy, an incurable and in young babies, aggressive heart condition. Like Nell Rufus underwent open heart surgery for his minor heart problem. I cannot describe the hell I went through agreeing to that procedure on his tiny person. The operation was a success but Rufus didn't really ever recover. His cardiomyopathy worsened and the strain of the surgery and multiple infections and just of growing meant that despite his efforts and those of the medical team, he died aged four and a half months. I loved my son with all my heart and there is nothing I wouldn't have done to have him still with us. But I am also sure that I will not be continuing any future pregnancy where there isa suggestion that the baby might have a genetic condition. Not because I have an agenda for a perfect child -I believe all children are perfect. But I now know from harsh experience that, no matter how "broad spectrum" the disorder, there is no way of knowing in advance how seriously your child will be affected. Life should be a gift not a burden. There were some wonderful times with my son but there's no two ways about it - he suffered and then he died. I will not see that happen to another child of mine if I can prevent it.

[Angela]

A friends baby is almost 3 months old now. She has Digeorge syndrome. Doctors say one lung is not getting proper blood flow due to an artery being almost non existant. She already is waiting to grow stronger to have the good arteries moved to the correct side of the body and now this problem with the lung has developed. So far, the doctors don't know what to do. Has anyone experienced this problem with the DiGeorge syndrome? And where are the specific DiGeorge Doctors to help know what to do! This Angel is precious and answers are slow in coming from her own doctor. Thank you, friends, if you can offer some info!

[Amanda]

My daughter was born Feb 15th 2007 slightly jaundice other than that we were told she was perfect . While i was pregnant with her i kept complaining she wasn't moving at all , that i couldn't eat and that there was something wrong ... Ultrasound after Ultrasound and Dr's and nurses telling me i was wrong the baby was fine i believed it . One month after the birth of my baby she was diagnosed with a large vsd and an underdeveloped heart pretty much she has two left sides of her heart it can't heal on it's own and she has been through two open heart surgeries to repair the large hole that was in the lower two chambers she came out of that on an ecmo machine keeping her alive ...finally after 2 days of hearing she wouldn't make it they managed to get her off the machine and put a pacemaker in ...right now we don't know if my daughter will live past two right now without a heart transplant she is now 10 months old almost and weighs 13lbs she was born weighing 6lbs 1 oz . She is just learning to hold her own bottle , roll , and say Mama and baba .. She cant crawl , walk , sit up or stand up without being held . She is at the PCP'S 4 times a month , cardiologist 2 times a month and receives therapy weekly every friday . If you ever need someone to talk to or want to read more about Carissa's condition you can visit our site at www.myspace.com/EvanAndCarissa

[Rebecca Bale]

My daughter is only 7 weeks old and was born 7 weeks early weighing only 3lb 12 she has been detected with the Tretology of the Fallot with the absent pulmonary valve and has digearge syndrome. Seeing all these posts has made me more possitive with my daughters future as i know we have alot to go through. She already has caught septicemia, and Nec twice lucky enough without needing surgery. Were just waiting for her to grow enough to have her heart operation.

[waystoinducelabor]

It is very heartwarming to read these posts. I had never heard of DiGeorge syndrome before.

[Justin Ryan]

I have read your article after researching DiGeorge Syndrome over the past couple of days. My wife and I just found out, with the use of the FISH test, that our baby has DiGeorge. She is currently 20 weeks pregnant and we are both very scared and faced with a seriously difficult situation. We are both getting tested soon to determine if we are carriers. I want to give the baby a chance but she doesn't feel the same way. I am lost right now.....

[Miranda March]

I too have a son with an undiagnosed problem, although I am almost certain that he has an Autistic Spectrum Disorder. It is terribly frustrating and very difficult to cope without a diagnosis for one's child because people view one as either mad, a liar, or sufferung from some kind of awful illness in trying to gain attention for oneself. (My son's school even tried to convince a Child Paediatrician that I was eccentric and responsible for my son's educational and social difficulties.)
I am none of the above, only a very loving and understanding mother and will struggle on to try to gain understanding and support for my son who very definitely has some kind of condition. Jonah is rather like an electric circuit whereby something is preventing the light from switching on. Messages do not appear to reach my son's brain. My mother and I knew that something was not right with Jonah when he was little. He was not speaking until he was 4 years old and even then needed speech therapy for some time and words only came very gradually.
I wanted to say to other parents (as Jonah is now 16 years old and facing many social and communication difficulties), please follow your gut instinct if you know that something is amiss.
I am left heartbroken. I am also incredibly angry that Jonah has been neglected by professionals in the way he has been. I fear that my son is going to continue to face a major struggle.
Miranda (HERTS)

[Shelley]

Thank you so much for speaking out. It's amazing how many people have heard of DiGeorge Syndrome through your experiences. My litte boy Jay is 17 months old and at his 6 week check the Doctor noticed a heart murmur. We saw a cardiologist who confirmed that he had a serious heart defect (Tetralogy of Fallots) and probably had Di George Syndrome/VCFS/22q11 deletion due to his facial features. This was confirmed months later after a FISH test. Jay is such a sweet little boy. Fed via an NG tube and awaiting a gastrostomy, developmentally delayed,has Glue ear which has caused hearing difficulties, language problems (not talking yet). Had open heart surgery aged 10 months and yet he wakes up every single day with a smile. He is such an inspiration yet people seem so scared of him. I wish people could see the Jay that I see. He is clever, charming, mischevious and adorable - just as any little boy should be.

[Dawn Clarke]

My daughter was born 5th November 1980 and seemed a normal child but very shy with concurring ear infections. She struggled though out her school and college life, not gaining any qualifications nad was a very poor mixer with people of her own age. She had difficulty keeping a job, and did not mix well. However it was not until she had a baby boy who died at the age of 13 days that our world turned upside down. Post Mortem revealed our beautiful looking grandson had died of heart failure that had not been picked up by either scans nor medical people after his birth. He had a congenital abnormality of the heart (Truncus Arteriosus) and after FISH test it was confirmed he had 22q deletion. Further tests concluded, our daughter had the same deletion which had remained undiscovered till she was 23.
I immediately got onto the internet to read all I could of this chromosome deletion and realised how lucky we had been with Tanya as she has not shown any of the systems apart from learning difficutlies and behaviour problems by her lack of confidence and fear of going places unaccompanied.

She now has a two and half year old daughter who also carries the faulty gene. When she was one day old she had a detailed scan of her heart and it is perfectly normal so we do not know how she is going to be affected by her deletion. one side of her face was slightly flat and her forhead was mis-shaped but it by the age of one this was not noticable. To date it is only showing in her lack of speech. She is a bright little girl with a pleasant personality but only says two words.

What the future holds for her we do not know but she is loved by all the family, not only her parents.

It would be interesting to hear from any one else in a similar position.

I hope also I can set any parents worry to rest as our daughter is evidence that DiGeorge can be mild enough for it to go undetected and to lead a near normal life. Our daughter is married, keeps a home and goes to a part time job even if it is not a highly skilled job and above all else, she is happy.

[Pat]

Hello India,

I am the very proud 50 year old LG mother (legal guardian) of an eight year old girl with DiGeorge Syndrome - passed to her by her birth mother who also has the syndrome and is my first of three godchildren.

Her birth mother was born in the late '70s to my best friend. She graduated high school from a mainstream program and is now living on her own in a boarding home about 150 miles from me but near her mother.

Now 30, her strongest trait is the one for survival - and it has been put to the test often - but that is another story ...many, many stories ...

Now when both girls are together, you'd think they were one in the same person!

I just read online today that one function of their compromised chromosomes is to ensure the differentiation between the generations... very interesting!

Both girls are my best companions! Warm-hearted - lots of hugs - and a gift to all who understand them. Both have borderline IQ's but are non-stop talkers. Verbal skills are present but to quote my daughter's latest standardized test report - she shows minimal evidence of mathematical skills. To that I can attest - as it seems that side of the brain - logic - common sense - math skills- is equally deficit in the birth mother. Educable or trainable - both teter on this distinction.

On the brightest side, my eighty year old dad is now my daugther's best mentor and friend - teaches her everything from the proper way to empty an office garbage can to caring for tomato plants.

Little grandma (81 now) and a former High School RN, is fascinated with the abilities and limits she exhibits and we chuckle at some of the overly optomistic school reports - ok this was a bit of a dig as our family is on our second DiGeorge child and we have a leg up on them. As I've told a few teacher, her future is not in academics! But her future is brighter than you'd imagine...

Big grandma is her biological maternal grandmother who understands the need for but does not quite like her unique moniker. She raised my daugther till 4 1/2 then I was lucky enough to be in a position to bring her to my home where special education is leaps and bounds over Big grandma's location.

My daughter is NOT and will not be mainstreamed. Mainstreaming was a long term disaster for her birth mother.

I compare it to sending your pre-schooler to the upper grades - they just see the world differently yet they understand that being the same age - they should ape their peers - leading to so much heartache, teasing and emotional scaring.

The result of mainstreaming or trying to 'normalize' my godchild (yes at the time the family also was trying to 'fix' her) - gave us a very uninspired, frightened, guarded, untrusting of authority, unwilling to go to adult schooling and/or work programs 30 year old.

I am an amateur student of human behavior and was always interested in my godchild and now my daughter's development. With humor, which is high on my list to teach my young one and with the grace of god, we'll do better job for the young one.

When someone asks about my daugther, I say she has a syndrome similar to down syndrome. The listener then automatically understands that it is a genetic defect that cannot be 'fixed' through medicine, diet, discipline or education. The child's abilities are what they are and it's up to us caregivers to integrate them with society on the best terms.

My daughter enjoys every day ... she has taught me so much and I look forward to throwing my head back in laughter and joy with her... hopefully for many, many years to come.

P.

[Louise Snowdon]

My son has congenital cmv infecion. This has caused deafness and also learning difficulties and developmental delay. What my son also has is tremendous spirit which I know will help him through life. Having a child with problems has really opened my eyes to a lot of things, and I certainly woudln't swap him for the world.

[Sreela Gillams]

So glad you have said it in a community where one is increasingly afraid to say what one thinks for fear of being labelled illiberal. I know I speak for the thousands of British Indian women who would agree with you - nobody is capable of judging whose life is worth living, and the capacity to feel joy is the one thing that defines a human being. Nobody should feel that they have somehow acquired the right to take that away - not government, not parent, not doctor.
(And this from a doctor's daughter and granddaughter!!)

[Catherine House]

I too have a son with an undiagnosed syndrome. I knew something was wrong long before the doctors concurred. When they finally confirmed reflux problems (in various locations), heart problem, tongue tied, developmental issues I felt vindicated but angry. The nights I'd lay beside him - he never slept for longer than 45 minutes at a time - terrified of what may happen and distraught that no medics would take me seriously. He is now six, delayed but in mainstream and quirky. I have no idea what will happen in the long run but I am convinced that his constant demands and repeated hospitalisation had an incredibly negative impact on his older brother. If you have a child with special needs then everyone concentrates on them and older children become invisible. Special needs children as loving and wonderful as they are do not just impact on parents. Would I knowingly have another? Probably not as I feel my duty of care to my older children has to feature in any decision, if I were childless then it wouldn't be a decision I'd need to make.

[Magda]

Answering your question what people are afraid of: quite often, women are afraid - and rightly so - of the strain a disabled child will put on their relationship. The statistics are rather discouraging: really BIG percentage of men leave families with severely disabled children. Leaving aside all inquiries why they do it - the most simple answer is that they just can, while women cannot - this is a fact of life. May be all of you have reasonably supportive partners. Count your blessings, but remember that there are women who do not, and who are lucid enough to know it already during their pregnancies. They simply do not want to live a life of misery: a single parent with a disabled child.
And there also are simple financial considerations that none of you seem to have thought of: women have abortions when there are signs of serious ilnesses because they know they are not in a position to support a family with a badly disabled child. It is as simple as that.

[Sonia]

I don't know how I could gather my courage today to talk about my persoanl experience that would make me look like "the coward of the group". My daughter was born 5 years ago with all the association of severe heart defects you could imagine and had surgeries and survived a heart attack. Many clues during the pregnancy showed that something was wrong like the small size of the fetus and a high risk for Down's but amnio showed normal chromosomes. Anyway, she is "undiagnosed" until now and I am not giving up, God only knows to how many genetecists I have talked to in this planet..the issue I am really writing about today is my 2nd pregnancy that occured 1 year after the 1st one. At that time, I was going through a clinical depression (that was diagnosed later), I was in the USA 7000 miles away from any relative...my husband, ironically a genetecist, said that if anything is found wrong with this fetus, we should terminate. I was convinced that everything will be fine until we started seeing some signs: abnormal vertebrae like for my 1st daughter, small size..the heart defects were diagnosed by an ultra sophisticate sonogram when I was 5 months pregnant. My husband said that we would never be able to handle another traumatic episode. At that time my daughter was only fed through an NG tube, and did necessitate a lot of care..I begged him that we should try and he was so sure that it is out of question. I did teminate and regrets it til today because my 1st daughter is today stable, smart, lovely. She is only small but does it really legitimate a termination?? I am still on antidepressants and having weekly sessions with a psychotherapist since 2and1/2 years. Should we only look at how tough and great these kids that went through a lot are? or should we also consider that a woman's mental health is important at least for the sake of raising a child having "disabilities"? I am still lost and can't put my mind to rest.

[Nina Evans]

I have just read your article in the Daily Telegraph that recounts exactly what happened when Nell was born .Poor you. My son was diagnosed with a serious heart condition at a week old and it was all VERY traumatic. He too has had successful surgery.
You made me remember what happened the day we got the letter with the date of Finlay's surgery, and that sense of impending doom. My husband and I talked about it quite matter of factly and then he went to work without his computer and I crashed my car into some railings.
Nina Evans

[Anna]

We refused all antenatal testing in 2 of my pregnancies as we knew we would not be able to terminate (exterminate??) a baby that we so longed for. Our second child has Down's Syndrome and , yes , the shock was enormous. Fortunately her father worshipped and adored her from the moment she was born, because it took me some time to tell her I loved her and really mean it.

But now , eight years on, I cannot imagine life without her as she is. It terrifies me to think that, had I discovered her condition in my pregnancy, we would have been given the option to be living a life without her. She is a person who enhances our family life and whose existence we celebrate.

I had an amnio in my third pregnancy although every bit of me felt this was wrong....what would we do if the results were "wrong", what pressure would we be under to kill this baby, and everyone would have understood. We didn't face this decision and I still don't know what we would have done.

However we are contemplating having a fourth baby and A/N testing and disability do not come into the equation. We are far more concerned about the age gap and where they would all sleep!!!

[Jane]

We also had normal scans and test in pregnancy. I was 31. When Ems was born I did think, oh she looks a lot different to her much older half brother.
After a few days of not gaining weight, short breastfeeds and the evidence of a substantial irregular heart murmur we were shuttled off to a paediatrician (I am on the whole totally suspicious about doctors, medicines et al more so when interfering with my precious newborn)
We got an early idea of what it was - The good doctor mentioned Noonan Syndrome - not until meeting others did we realise how LUCKY we were to get this diagnosis so early.
So you do what any normal person would do, you get home and google it for 500 hours.
Had I had this diagnosis in my pregnancy and googled it, I think we may have opted for ending the pregnancy, although hand on heart I cannot say for sure.
Now 4 yrs on from Ems birth, I have the most gorgeous, intelligent, healthy, happy, adorable little girl.
She has possibly one of the mildest cases - but you would not have known that from a scan/amnio - not that it can be picked up yet but hey ho...
I love her and would not want her any other way.

[Diana]

Thank you India for saying what so many people are afraid to say. My first son Mark was born with Downs Syndrome. I am very glad that I didn't have a clue during the pregnancy as I am sure I would have been terrified enough to seriously consider abortion, though I have always been opposed to it. It was devastating news, but we coped, with lots of support, and now he is 13 (a teenager, aargh) and we can't imagine life without him. When I was pregnant for the second time I refused all tests,despite pressure from my consultant. We decided it would be better to just deal with whatever we were presented with. Jordan was fine and the two boys are very close. Jordan accepts and supports his brother and thinks the world of him. Yes the path is not always easy, but being a parent is one of the hardest jobs in the world anyway. Two years ago we all went ski-ing and Mark learnt to ski with a 1-1 instructor and absolutely loves it. He enjoys life and lives it to his absolute potential.

[Alison Gibson]

Thank God somebody has said it all out loud! I used to work with people who were disabled, including children for over 8 years and encountered everything from blindness to Down's syndrome to Global Developmental Delay and each child I met changed how I viewed my outlook on people. A parent of a severely disabled child once said to me, 'it's such a shame that people can't get past the word disabled', which I think is totally true. Having been in a wheelchair for the duration of both my pregnancies and experienced disability from 'the other side', what are people scared of? What, that your disabled child, or your wheelchair will touch them and an entire full blown contamination will occur? Fortunately both my daughters are fine but I refused any tests during the pregnancies as they were both still going to be our children whatever happened.

[Nikki (Luca's mom)]

You've really hit the nail on the head with this. Luca is our first child (chromosome abnormality blah blah). We will be trying for a 2nd. I know i'll have the option to have heart scans etc, but i will turn them down. I'm scared, could i handle 2 children with special needs? You know what? Maybe i can! I don't want to know if there's something 'wrong'. I thank god i didn't know about luca's condition cos i'm not sure how i would've handled it.. would i have had Luca? I don't know. But Luca has taught me more in his 15 months of life than i've learnt in a lifetime. If it happens again, so be it. I'll find the strength, and the love. x