What support have you recieved after birth of special needs baby ?

[lottie77]

Hi ladies I was wondering what kind of support or help you have been offered or given from your health authority, midwifes doctors , consultants etc

I ask this as I have been given zero suppoert advice or help infact I the more I think about it the more annoyed I get when I gave birth to my down syndrome daughter a consultant came in and said yes it looks like downs because of this that and the next reason , then when she left I was then put in my own room 3 hours after having her and hubby had to leave because visiting was over and I was never approached once by midwives or any other worker to ask how I was coping or how I felt with what I had just been told for the whole of my 4 day stay ( I spent the 4 days crying alone in a room feeling shit and not knowing what was going on ) , I kid you not there was not one iota of help or advice thrown my way we were left to cope on our own, even when I left absoloutely no one has spoken to us about help we might need or information we need to know about downs we are simply given appointments through the post to attend appointments at the sick kids hospital for heart and health checks , we attend get the checks and are sent on our way no further in the know about down syndrome. Its a total disgrace and I am going to write to my local health authority to tell them about my disgraceful treatment or should that be lack of treatment, support help or information

 

[Midnight_Fairy]

Thats disgraceful and I think its a nationwide problem My friend went through the same. Its awful. Do you have any local support groups? You could even write to the MP. xx

 

[Marleysgirl]

Talk to your Health Visitor and find out what support is provided in your local area.

We had monthly appointments with the hospital Paediatrician after discharge, and two-monthly appointments with the hospital Physio. After his epileptic attack last spring, the epilepsy nurse referred us to the Pre-Schools Special Needs Service and we have received amazing support since for both his development delay and his deafness.

 

[jennie-jack]

we get none. we see a ped but we get know early intervention or portage or physion or anything.

we were given a feeding tube and because i have done it before we were left to it.

 

[Tegans Mama]

Ok.. My daughters needs are both physical and mental. We see as lot of different people, for her HUGE range of needs.
- Neurosurgeon (for her Spina Bifida, hydrocephalus and chiari malformation)
- Neurologist (for epilepsy)
- Urologist (for bladder and bowel issues)
- Orthopaedics (for hip displacia and club foot)
- Dietician (slow weight gain and food aversions)
- paediatrician (general stuff)
- Physiotherapist
- Occupational therapist
- Support worker/specialist teacher for physical impairment
- Educational psychologist
- Health Visitor (who is a GREAT help if you get a good one).

I am not sure how things work with Down Syndrome but I do know that if your child has problems, there are people who are there to help with them. In the UK, you really do need to fight for the things you feel your child/you need. I would talk to your health visitor if you feel you are not getting enough support. But if your child doesn't have any "health needs" at present, there is no health professional (doctor wise etc) who can help you, because they only help when there is need for it. Do you feel you need more emotional support? Your HV might be able to help on that front also.

 

[chel27]

i can see where your coming from hun my son has 2 rare things, hirschprungs disease and coactation of the aorta
although he has seen many people to deal with his problems, no one is really there to talk to/ to listen or answer any queries regarding the problems.

although i dont generally like alot of people poking their nose in because they mostly want to just be nosey or do medical research on him

but if i have some questions no one is there, we just tend to learn as we go along.
its like now my son is in hospital because he has a tummy bug and because he has a stoma and hirschprungs disease it makes him gravely ill because he dyhydrates way to quickly we shall deal with this for life but no body ever really tells you all these things and information is limited.

if you do want more people to talk to or help i would contact your midwife/doctor and ask for some advice xxx

 

[Emmea12uk]

In terms of emotional support you need to ask your health visitor. It is a good idea to ask your go what other help you can get too. It is important you deal with your emotions now as they come back to bite you later - even years later.

I had help from a government scheme called early support. It isn't in every area. A lady came round and put me in touch with everyone from charities, respite care, Children's centers, even dla etc. She them took over all my appointments like she was a secretary and organized training for local childminders and creches to give us a break. She is still with us now - she organized a 3 months meeting called team around the child where everyone involved in our son's life goes, even medical professionals.

Besides that, the biggest help I had was private counseling and hypnotherapy.

All the best.

 

[Nathyrra]

I really feel for you

I also didn't get any emotional support in hospital. I was also put into a room and left for 4 days. I cried my eyes out, no one asked me if I was ok. or how I was coping. I felt like the conversation that 'broke the news' was tactless too. You'd have thought these people would be trained to deal with these issues better but it appears they don't!

As far as the rest of the support, my son gets Early Intervention and Physiotherapy. We did have to request it first though.

 

[capel]

I have to say that the nurses at the special care unit were very nice and VERY supportive. People at the maternity ward not so much.

About that early support have a look here
https://www.direct.gov.uk/en/CaringForSomeone/CaringForADisabledChild/DG_10027494

 

[lottie77]

Thanks for all your replies the main problem i have is that no one did or has said what is down syndrome , what are the causes of it , who can I or my other cildren go to for information or support, what are the health problems associated with it or what are the developmental problems that my baby wil l have now at this moment not when she is older such as being slower to hold head or smile tec etc these are things i have found out for myself and i am of the opinion that i should not have to ask all this information it should be given out as soon as a baby with any genetic disability is born my girl is 10 weeks old and still no infofrom anyone im disgusted to the core its no wonder so many women get depressed in these situations i feel that being fully informed is key to accepting and understanding any special needs child. Just the bloody basics would be a start

 

[Emmea12uk]

It is the same for most diagnosis. It is discusting but thank god for the Internet and the charities set up to offer this support. I know little of ds, but there has to be a specific charity which can help answer all these questions.

Unfortunately there is nothing for emotional health until a doctor starts dishing out the meds for depression which is a shame as a good old chat with a councillor can be so much more beneficial. Or even a specialist mw who can answer your questions and signpost you in the right direction.

 

[Lisa2701]

I am so sorry to hear that you have been given such little support, it is absolutely unacceptable that you have been given such little emotional support and information if nothing else. I have a cousin with DS who is 13 now. She's an amazing little girl.

My son is 6 and was born appearing to be your average baby. He was a very demanding baby and at the age of 18 months lost all his speech, at the age of 4 he was diagnosed with classic autism. You will know yourself that words can't describe how you feel when your child is diagnosed as special needs and I too wasn't given any support. We were left to just get on with it. I have found that going to a parents support group really does help. It took me a long long time to be ready to face such a thing, but I am so glad I took the step, I now have several friends with children who are on the spectrum and we've done trips out to fire stations with the kids together and things and its lovely because i don't feel like i have to explain my sons behaviour to them, they understand already. I would urge you to find other parents in the same situation as yourself, no one else can truly understand, even friends and family who do their best to understand just simply can't! That's my opinion anyway. I hope you find the support, by whatever means, that you need. (hugs)

 

[midori1999]

I'm so sorry you feel like you've been left to cope/manage alone.

I couldn't get rid of health professionals when I has my son (who was diagnosed with Downs at birth) and it really got on my nerves, tbh. He was my 3rd baby and I just wanted to get on with it. The health visitor kept saying he was 'failing to thrive' but both her and the paediatrician failed to notice the holes in his heart were the cause of the problems and it was only by chance at a routine appointment with the cardiac specialist at 6 months old that I found out he needed surgery. He had the surgery two days later, so it was urgent!

I am not convinced most health professionals are really aware of how to deal with things tbh. Certainly midwives and health visitors have limited experience of babies with Downs.

Have you contaced the Downs Syndrome Association? They will have details of a group in your area you can go along to and meet some other parents. They will chat to you about what help they had and how easy it was to get in your area.

Certainly my son saw a speech therapist for the first time at a month old (I kid you not!) and had 'portage' (which is basically learning through play) which someone came out once a week to do with him. He also has a physio who visited at home from a young age. It was partly pointless as my son refuses to interact with people he doesn't like, so they couldn't always see what he was capable of doing as he refused to have anything to do with them! We never had many medical appointments though, but my son is generally quite well physically now.

 

[lottie77]

Midori this is also my 3rd child my others are 13 and 6 , god i know the feeling well when folk wont give you peace to get on , all i want is information on where to get more information if that makes sense and i at least expected the help & support & information to be offered if I needed or wanted it , im so lucky my daughter is very healthy infact shes a total starver and a wee chunk born 8lbs 11oz and now 9 weeks later 13lbs 3oz I will contact the downs syndrome association thanks

Thats terrible the holes in your sons heart were not noticed thank god its now been fixed, thats the only thing my daughters had done she had a detailed ultrasound of her heart at a few days old which is standard from our health authority thank goodness.