Refuse to take disabled child home?

LegacyUser

Hi there
If you have a baby born with unexpectedly severe special needs/syndrome that was undiagnosed can you refuse to bring the baby home from hospital. Say if it would be impossible in the family circumstances to provide 24 hour care for this child, really for indefinite time.
What are the logistics of same; who in the hospital to approach whose care would the baby go into etc. Not sure if there are residential homes etc for such children with special needs anymore.

cailin.

Hi OP,

You don't say whether this is your baby, or someone close to you. Nonetheless, my advice is the same.

Naturally it is a shock to any new parent or family that a child would be born with an undetected illness, disability or increased care needs. There is a sense of loss for the parents in terms of their future memories they would have with their baby.
You mention that the family circumstances won't allow the child to be cared for around the clock, however any new baby needs 24 hour care and consistent care giving being so dependent. Of course, the baby in question will need extra supervision and care given it's additional needs.

A baby going into care, whether it be to the care of another family member, foster care, or residential is generally not an unplanned thing that happens so it would be best for you/ the parent to approach the doctor, or nurse manager, or social worker attached to the team as soon as possible so that professionals can offer the right support to the parents. The Social Worker on the team will be able to provide you/ the parents with practical and emotional support at this really difficult time.

As a parent, you have a duty of care to your child and responsibility to ensure that their care needs are met. If the parents refuse to take the baby home, it's likely that Social Services will be notified so that an alternative arrangement and supports can be put in place.

JellieBabie

Are you asking can you abandon your child?

NedNew2

JellieBabie wrote: »

Are you asking can you abandon your child?

No, she is asking "can you refuse to bring the baby home from hospital?".

Xterminator

JellieBabie wrote: »

Are you asking can you abandon your child?

can you refuse to leave the hospital where there are doctors and nurses and supports instead of bringing baby home where you are on your own.

not an unreasonable question, given how overwhelmed parents could be feeling.

Ursus Horribilis

It's not necessarily as black and white as abandoning one's baby. The "support" that's out there for people caring for dependent relatives can be little more than non-existent. Many of the carers in this country are being ridden bareback by the state and are doing this work with feck all financial support or help. Many people can't afford to give up their jobs to care full time for a dependent. Nor can they afford to pay for their care out of their own pockets. It's an utter nightmare.

Big Bag of Chips

Moved from Personal Issues

Moonbeam

I think that they need to speak to the social worker in the hospital .

lazygal

There's babies in every maternity unit in the country who have parents who won't take them home for myriad reasons.

Logically there is noting to stop a parent doing it, however in reality a social worker will be involved. The baby is still in hospital so its most likely all very new to the parent it might be just a shock reaction. However if the OP is asking can they asked to be relived off all responsibility for their baby that wont happen.

Big Bag of Chips

OP, it is unclear what you are asking. There are 3 very different scenarios that you might be talking about here.

The child being too medically unwell to be taken home.
Not wanting to take the child home, temporarily.
Not wanting to take the child home, permanently.

If the child is not medically well enough to be discharged, they will remain in hospital.
If the child is deemed medically well enough to be discharged, then they will be discharged, either into the care of the parents, or the care of the HSE (foster care).
If the parents don't want to take the child home, temporarily, they can ask for the child to be placed in the care of the HSE (foster care) while they get themselves and their supports in place.
If the parents don't want to take the child home, permanently, then the child will go into the care of the HSE and possibly eventually adopted.

The social workers are the people to contact. The nurses would be the first point of contact. They will then discuss it within a multi-disciplinary team.

ted1

millmill wrote: »

Hi there
If you have a baby born with unexpectedly severe special needs/syndrome that was undiagnosed can you refuse to bring the baby home from hospital. Say if it would be impossible in the family circumstances to provide 24 hour care for this child, really for indefinite time.
What are the logistics of same; who in the hospital to approach whose care would the baby go into etc. Not sure if there are residential homes etc for such children with special needs anymore.

All newborns need 24 hour care.

January

ted1 wrote: »

All newborns need 24 hour care.

Some need significantly more care than an average newborn including changing feeding tubes, monitoring sats/oxygen levels, administering specific medications at specific times and monitoring oxygen use etc.

OP, I'd recommend a chat with a social worker in the hospital. Realistically, your options would probably be the child placed in foster care. There are not a lot of care homes for babies with disabilities in Ireland.

If you do decide to take the child home then there are supports available such as night nurses and carers to come in and help to look after the child and designed to give you a break. Jack and Jill sometimes organise these for families.

Parents and guardians have the primary responsibility for the care and protection of their children

http://www.tusla.ie/children-first/parents-and-guardians


While fostering is entirely possible it not as simple as just requesting it and it will happen.

cbyrd

If Your baby has a medical condition that requires 24 hour care, you won't be allowed take him/her home until nursing support is put in place. Your baby will be assessed and the number of hours will be allocated and a strategy put in place
Otherwise you would be looking to give up custody of your baby.
Usually with a sick or disabled baby a team is involved, doctors, nurses, early intrventon team, physio, social workers and psychology. So no parent is left without the help and support they need.

The_Conductor

cbyrd wrote: »

If Your baby has a medical condition that requires 24 hour care, you won't be allowed take him/her home until nursing support is put in place. Your baby will be assessed and the number of hours will be allocated and a strategy put in place
Otherwise you would be looking to give up custody of your baby.
Usually with a sick or disabled baby a team is involved, doctors, nurses, early intrventon team, physio, social workers and psychology. So no parent is left without the help and support they need.

Cbyrd- that may very well be the theory- however, I can assure you- theory and practise are two entirely different things. I've been there, done that, bought the t-shirt. I've had the community welfare nurse frantically call Holles Street wondering how/why they saw fit to send a tiny baby who had to be fed by tube initially and at a max of 40 minutes intervals- day and night- home- with a seriously ill mother- who also required full-time care........

Its all well and good suggesting what should happen- but the OP needs to assess, via the social welfare officer in the hospital (and there will be at least 1 attached to any HSE approved maternity unit)- what supports can actually be put in place.

Being a new parent *is* a fulltime job- and does take a lot more work than anyone will ever tell you. Sometimes you hear stories of the perfect baby who sleeps through the night, has no difficulty feeding, doesn't have severe reflux, doesn't have sensitive skin, doesn't constantly vomit, isn't in and out of Crumlin or Temple Street like a boomerang- however, for a lot of parents- those magical mythical babies, may as well be unicorns.

The OP hasn't indicated how her new baby's disability may impact on her care as a baby (over and above the constant love and attention any baby needs- or the exceptional care some babies need)- nor are we asking what this is- and how it might impact.

OP- any baby requires a level of dedication you may not have given anything before in your life. You are at your baby's beck and call, day and night. It can be difficult- and the one thing no-one will explain to you- is the lack of sleep, and the sheer exhaustion that becomes a new normal for you. I don't know what disability your child is expected to have- however, it may very well be the case that it doesn't impact on their care as a baby- any more than it would do- if they did not have the disability.

Its also not clear what you mean by refusing to take the baby home.
Are you suggesting you wish to relinquish the baby into the care of a foster home? Babies are not kept in maternity hospitals, regardless of special needs, for longer than is entirely necessary. You are expected to be able to provide 24 hour care for a new baby- regardless of whether the child has special needs- or not- I'm sorry, but pointing out that you can't- just doesn't ring true- any baby needs 24 hour care.

I fully get- you've been blindsided by the unexpected needs your baby has- however, I do think suggesting you considering refusing to take your child home from the hospital- is irrational.

You need to sit down with the social worker in the hospital and ascertain what your options are. You also need to get clarity on what the implications of these options are- for example- if you do leave the baby in the hospital- what happens next- etc etc

You need to go into information gathering mode- you need to educate yourself into what the needs of your baby are likely to be, what supports are out there, and how to access those supports. You need to make informed decisions- after you are equipped with the facts. And- hardest of all- you have to try not to panic. Being a new parent- is overwhelming- and you have so much more on your plate than just this.

As a first step- ask for an immediate appointment with the social worker in the hospital- and after that- get the contact details for your local public health nurse- and find out the actual facts on the ground.

Thinking of you.

AndrewJRenko

It might be worth contacting https://www.jackandjill.ie/ to see what support they can offer.

cbyrd

The_Conductor wrote:

Cbyrd- that may very well be the theory- however, I can assure you- theory and practise are two entirely different things. I've been there, done that, bought the t-shirt. I've had the community welfare nurse frantically call Holles Street wondering how/why they saw fit to send a tiny baby who had to be fed by tube initially and at a max of 40 minutes intervals- day and night- home- with a seriously ill mother- who also required full-time care........

Well, I'm just going on my own experience of my own baby who is tube fed from birth and requires round the clock care, who was not allowed home until the nursing support was put in place. . Ng tube feeding can be done at home. Every 40 minutes? That would require a pump which I've also been trained to use. It sounds like your baby was not given sufficient care and I'd question negligence on the hospitals part.
Jack and Jill can provide nursing care if you apply and you can also apply for hse agency care, this is usually done with the help of Early intervention and the phn. I'd imagine this is why the phn saw fit to call the hospital and get the situation rectified.