Biological parents of babies and children with FASD

[LJM83]

Dear all. I know a lot of you are likely to be adoptive parents of little ones whose mothers behaviour duing pregnancy has left them with potentially life long parents. My circumstsances are a little different. I drank heavily during the first 10 weeks of pregnancy not knowing I was pregnant. I am so scared and feel so guilty I can barely cope but trying to keep it together for my beautiful 3 week old baby. Although I always wanted to be a mother I never in a million years I imagined I could be in this situation, I would never have deliberately put my baby at risk. At the moment there are no signs that anyhting is wrong..he is very hard work and we have had some feeding difficulties but I dont think these are related at this stage, just getting used to things and trying to get into a routine etc but obviouslky it could be some time before we know if there are any real problems. I would be grateful to know if anyone else is or has been in similar circumstances and also adoptive parents, what your views are, Thanks

[Joygirl]

Hi the majority of children with FASD live with their birth family. If you reach a point where you would like to talk openly with other birth mums, suggest that you email The FASD Trust direct.

[Joygirl]

At the minute you are still recovering from the birth. Please give yourself some time and congratulations on your new son. Best wishes

[LJM83]

Thank you Joygirl and thanks for the suggestion. I had looked at some of the chats and got the impression that the parents were all adoptive so that is helpful to know.

[BernieBubble]

Hi there, try not to beat yourself up, hopefully things will be fine for your baby, if there are problems later all you can do is be there for your little one and feeling guilty will not help at all. There but for the grace of god it could happen to so many women before they know they are pregnant, stay strong enjoy your baby for now x

[LJM83]

Thank you . I know youre right its so hard and knowing that I will not even know for sure either way about any problems for years makes it worse but I just have to get on with things. Knowing that there are others out there helps x

[Hidden]

You may wish too contact Birth Mums support network group sure there will lots of support and chat available for you contact Pip Williams at [e-mail] . all the best chin up and goodluck

[Hidden]

We are in similar situation with new baby being experienced looking after FAS/D baby's are able too kick-start all

all investigations early Genetic blood test's, Heart and brain scans , full paediatric support but still have too push every thing, so far everything has come back negative so we are on a good run , we still do swaddling , sensory intervention's, light, sound, touch, comforting all will help reduce secondary problems later and prevent post traumatic stress, FASD can not be ruled out. We have the additional problem of drugs withdrawal. Everything is

working great and is now passed the worst, have had many a baby with such history but I can reassure you most have no significant Alcohol or Drug related problems . Even my two older children with full FAS now adults lead a normal life. Still have FAS with good early interventions many secondary problems can be reduced quite significantly

[LJM83]

Thanks Goshua, when you say early investigations - how early do you mean, and did you start them due to your own suspicions that something was wrong or because you knew already that there had been history of alcohol use? (is this an adopted new baby or are you the birth mum?). What I had been told previously was that we'd just have to wait and see until he gets to 3-4 years of age when problems might start to be apparant. We havent had any tests but all of the antenatal scans were fine and presumably anything detectable on a scan would have been picked up at that point and he is normal weight / size, normal head size, normal facial features, there were no structural abnormalities detecte so I think that rules out full blown FAS but of course not FASD as problems with brain function wouldnt show on a scan. I dont know that he is a stressed baby or anything like that, fairly content most of the time other than when he's hungry! I dont swaddle him as he seems to like having his hands by his face. He is probably a bit young for sensory intervention, I try and be interactive but it might be a few more weeks before he takes an interest whether or not he has been affected. I didnt use drugs and I stopped the alcohol as soon as I realised so I am hoping that as the 2nd and 3rd trimester were alcohol free then he might be okay but just dont know.

What is the hitstory with your children if you dont mind me asking, were they exposed to alcohol throughout the entire pregnncies? thanks again for your help..

What

[LJM83]

sorry another question - what are the genetic tests for - is this to rule out other non FASD related problems?

[Hidden]

Have been looking after children for over 37years. My youngest was diagnosed as failing too thrive at only 1lb 12oz at 3 months was diagnosed again by chance as FAS we had too do all research interventions ourselves. just passed on knowledge over the years. Regards blood test's will detect chromosome or genetic deficiency related too associated problems. FASD research is on-going one may not have FASD but may carry defective Gene which could or would lower tolerance level too alcohol thus being unaware of danger even with very low intake.

Test's will also determine likelihood of secondary problems , Also likely hood of congenital heart defect's. Our dd had hole in her heart, Central nervous system disorders , short term memory, growth and skeletal problems , one would not believe it looking at her. Still has all but is O.K. and independent.

YOU Would know if baby required any interventions so would think all is OK at this stage, like I said if we know history of children and possibility we start intervention FAS or Not will do no harm anyway . Yes children were Adopted. Many of children we have looked after have gone on too adoption and all are well, few had ?? FASD but are all fine

Think you may be worrying too much enjoy your child , Plenty of fun fresh air, and Exercise is the best tonic at this stage. Exercise is a crucial element for brain stimulation and cell growth in children , hence baby massage, play therapy, swimming etc. also helps communication , and motor skills , executive functions etc.

[LJM83 in reply to Hidden]

thank you thats really helpful and its lovely to hear that your children are doing okay despite their original circumstances . Thats amazing to have made so much of a difference. I think youre right, I think for now things are okay and will take on board what youve said about the play and exercise. He tends to be either irritable and hungry or cuddly and sleepy at the moment with little in between but its early days and hopefully playing and exercising will help him, I guess we just have to concentrate on whats happening now, do everything we can and hope for the best

[Hidden]

Pleased you feel more comfortable we have Two Baby's at the moment with similar History's, we feel sure all will work out well for them, lots of sleepless night's though. But these little interventions 0 too 6 months are very very

crucial will go some way to lesson the severity of possible later secondary problems . We did this with ours but with our

Consultant Paediatrician monitoring everything . So was structured.

[LJM83]

Sounds like you have you hands full with 2 little ones on the go! My little boy has been very unsettled the last couple of days and not always sleeping great but pretty sure he is suffering a lot of wind so trying not to worry too much about that yet, And when he does settle he is very content.Thank you - can I ask how you went about getting the involvement of the consultant paediatrician - I guess it may be harder for us on that front because at the moment my little boy has nothing wrong as far as doctors etc are concerned, but for your little ones there was more obviously a problem noticable straight away. Its too early to say about his motor skills at 4 weeks but he does appear to be progressing well given his age, is strong, tries to hold his head up, kicks, grabs etc..tries to crawl up your chest when he is hungry!!. We can still do everything you say though - try getting lots of fresh air, exercising, especially as he is getting older and more alert and play and look out for any problems if they do arise, in which case we can try for a referral. The GPs that I spoke to while pregnant were very unconcerned by what I told them about my drinking during pregnancy which makes me think they wont take an interest now either - , one said I would have needed to drink several bottles of vodka a day and be passed out to have caused damage, but pretty sure this is wrong! and I guess from their perspective they dont see many FAS or FASD cases ..because many cases are never identified / diagnosed so how would they know..

[Hidden]

FAS was spotted by the then community paediatrician who referred dd too Consultant who had too look it up , we had too work in tandem as dd was so poorly . was only given just a few years too live at this stage. Consultant was great became a friend , as this was new too him he recorded everything including photos and wrote articles for the Lancet on FAS. Still kept in touch after she was discharged sent her Birthday and Christmas cards , Don't get as many NHS Doctor's so committed these days unless they are paid extra sadly.

Amount of baby's here is no problem both ex nurses , we are also well qualified in childcare we have total 7 kids at home every one pulls their weight so there is lot's of support , some are older also qualified in early years education and child care so plenty of hands on experienced support available.

[LJM83]

Thank you for the reply. I dont think the doctors will take too much interest in our case as my little boy is healthy as far as anyone can see and just a beautiful baby but there is no harm in trying to get a referral to a paediatrician. Thats great its lovely to hear your story and thanks for taking the time to help me. I still cant believe we have ended up in this situation in the first place, he is so beautiful and I would never ever have put him at risk had I known, feel like such a failure at the moment and so guilty but fingers crossed things will work out okay and I can try and concentrate on being a bit more proactive. How many of your 7 have FAS or FASD?

[Catherine000S in reply to LJM83]

I am currently in similar situation. How is your little one doing by now?

[Dillibob2005]

My boy has fasd diagnosis got September this year. He has had behavioural problems. Concentration. Not going to school at one point in care on a unit shared care he is now back home. I am a birth mother was told could never have children was twenty one weeks when found out had socially drank first trimester as soon as found out stopped. Guilt is not gonae help little one if is a problem only being their will