Seriously Sick Child Advice Please.

SickBabyDad

My wife and I had a brand new baby girl 3 weeks ago. I'll call her Annie for the purposes of this thread. Annie is our second baby and our first girl. She's as cute as anything!

However, all is not well. From the high and euphoria we experienced for Annie's first couple of days of life, things have turned into a slowly worsening nightmare which yesterday reached new depths of despair, and we may not have even seen the worst of it yet.

Annie was born in a hospital down the country and was transferred to a Dublin hospital at 11 days old. She was floppy, had poor skin tone, but our main concern was that she was feeding very poorly and not holding her food down. We didn't think it was anything too sinister and were continuously assured it wasn't.

The first big fright was when 2 small masses were found in her brain. After a period of worry, we found that was probably nothing to worry about. Back to a semi-high! They were still investigating a possible chromosome abnormality. But I still though the problem was all around her floppyness which would be fixed over time, nothing too serious.

Then Annie had two severe episodes of oxygen desaturation in the past week, which were two huge frights. She is now in the Intensive Care Unit in Dublin. On a low again. But still convinced it wasn't hugely sinister.

But yesterday, we received half of Annie's diagnosis, and it is sinister – she has a mild-to-moderate case of Dilated Cardiomyopathy, also known as DCM. To put it simply, her heart, while it is structurally sound, is only functioning at around 55% to 57% of what you would get from a normal functioning heart. Although it is a mild-to-moderate case of DCM, it is extremely serious. She will be going on a waiting list for a heart transplant in London as soon as possible. That means going on a waiting list as soon as possible. Any heart transplant itself should one occur, would, I think, be quite some time down the line.

As I said, this is only half of her diagnosis. There is an underlying issue which remains unidentified and which will likely stay unidentified for several more weeks and her long term prognosis is heavily dependant on the outcome of this other diagnosis. They have to do a skin biopsy to test for what one consultant feels are likely to be metabolic issues, and the results of this skin biopsy is what will take several weeks. In the meantime, we have to monitor her heart function to observe if it's worsening. She's on drugs to ease the pressure of her heart, but that doesn't fix her heart.

So, I am completely devastated and overwhelmed with all of this. I can't even believe I am writing this. I don't know where to start. I'm worried about my girl, I am worried about work - they have been great but I don't expect them to give me paid leave indefinitely - I was supposed to be back to work on May 30th. I am worried about losing my health insurance cover if I lose that job. Believe it or not, I am worried about Brexit because any cover I have for a procedure not available in Ireland is covered only where that procedure is carried out in the EU. I haven't even talked to my insurer about it yet. We have some savings which are a lot to us, but not a huge amount. I am worried about how this is all affecting my son who has a couple of smaller problems himself. I am worried about my wife who has health issues also. I am worried about what things are ahead that I don't even know about yet.

That is the point of this thread - to find someone who has been through all of this or similar who can share their experiences and highlight any pitfalls.

Thanks.

FluffyAngel

where to begin op ,first off i am a parent and i know when my 24 years baby gets sick or in trouble as a child i blamed myself and went inward to try and correct what was wrong with him ..

I soon realised that it was the wrong approach as he needed me in the moment to guide him not look for the reasons

try not to look for the answer to siecnce in a deep spiritual irish (beat yourself up)way ,those worries are just worrys and like a good Irish parent you are caught in a maelstrom of thinking ..

can you have a sit down with work and outline what you need?
do you have somebody that can support /enable you in work?

illness and understanding sometimes go hand and hand

i wish you peace ..

Kurtosis

Mod note:

Moved from Long Term Illness, please note the Personal Issues charter now applies.

Merkin

Oh you poor thing, my heart really goes out to you and your family, it must have been a terrible shock to you all, especially at is what is supposed to be a euphoric time.

Please please please try not to worry about financial issues at this time as it's just white noise that you don't need. I understand from a practical point of view but you really have enough on your plate. I think you need to go into work and come to some agreement with them, either for compassionate leave or what have you, but something that will ease your mind on that front. Remember that you are going to need time off when your bubba undergoes surgery so you need to discuss this with them also and maybe make the hard decision to prioritise what days you do take off.

Have you a good family and friend network around you? I hope your little girl makes a full recovery, having an ill child or a child that needs surgery is a life changer and puts everything else in perspective. Sending you my very best wishes.

Knine

I went through very similar issues with my daughter, born floppy, breathing & feeding issues, was pretty obvious there was a genetic chromosome problem.

My best advice having been there is to take one day at a time but most important of all is to enjoy every minute with your precious newborn. I feel I missed out on my daughters first years as I spent all of it worried sick about her, wondering if she would survive etc. I ended up as a single parent as her father went into complete denial.

Don't panic about the health insurance, when I tried to get covered for treatment in the UK they refused so I went with the HSE treatment abroad scheme.

There will probably be lots of genetic testing done as was in my case but they were all negative. The waiting for each result can be heart wrenching. Eventually I went to Manchester & was put on a genetics study which had the funds to do the very lastest in genetic testing. Exactly 3 years ago I got the phone call with a very rare diagnosis for my daughter.

She is now 8 & is doing fantastic considering her very serious diagnosis. She has been through a lot. She is a very funny happy child who is an absolute joy to be around. I am now her full time Carer & giving up work was a shock to the system but seeing how well dhe is doing absolutely makes it worthwhile.

I know this is not the journey you planned but it does get easier. Take care & make sure you both look after yourselves too & make some special time for your son to make sure he does not feel left out!

SickBabyDad

Knine wrote: »

I went through very similar issues with my daughter, born floppy, breathing & feeding issues, was pretty obvious there was a genetic chromosome problem.

My best advice having been there is to take one day at a time but most important of all is to enjoy every minute with your precious newborn. I feel I missed out on my daughters first years as I spent all of it worried sick about her, wondering if she would survive etc. I ended up as a single parent as her father went into complete denial.

Don't panic about the health insurance, when I tried to get covered for treatment in the UK they refused so I went with the HSE treatment abroad scheme.

There will probably be lots of genetic testing done as was in my case but they were all negative. The waiting for each result can be heart wrenching. Eventually I went to Manchester & was put on a genetics study which had the funds to do the very lastest in genetic testing. Exactly 3 years ago I got the phone call with a very rare diagnosis for my daughter.

She is now 8 & is doing fantastic considering her very serious diagnosis. She has been through a lot. She is a very funny happy child who is an absolute joy to be around. I am now her full time Carer & giving up work was a shock to the system but seeing how well dhe is doing absolutely makes it worthwhile.

I know this is not the journey you planned but it does get easier. Take care & make sure you both look after yourselves too & make some special time for your son to make sure he does not feel left out!

Hi Knine;

Thanks for your reply and I'm happy and inspired to hear that your little one is flying it.

You didn't mention anything about a Dilated Cardiomyopathy diagnosis on your little one. Was there one, and was it as bad?

What level of care does she require whereby you had to give up work? (I'm probably thinking way to far ahead there)

There was a good lot of bloods taken yesterday and a skin biopsy by the Genetics team although I'm told, in Annie's case, it appears to be more of a metabolic issue.

Annie's condition worsened to a very worrying degree yesterday and she's now on a ventilator. But she has shown some improvement today.

But your experience gives encouragement. Thanks so much.

Knine

My daughter has a heart issue but it was mild. She had very floppy airways & used to stop breathing & turn blue. It recently came to light that this was caused because of an undiagnosed Cleft Palate with led to aspiration & numerous pnuemonia infections. There were many hospital stays because of this.

We had the skin biopsy done, numerous MRI scans, brain scans, surgery to repair her cleft, grommits inserted several times,scope tests, blood tests etc. Don't get too hung up on these things because they can end up being a huge rollarcoaster of emotions & mentally very draining when you build yourself up for a test result & they come back negative.

I had to give up work due to the huge amount of appointments, physio, medical, Occupational, speech therapy, hospital stays etc.

In terms of care needs she needs help with all aspects of her daily life, has an intellectual disability, safety issues.

It all sounds like doom & gloom but I have actually met some amazing people through my daughter. She is her own little person with lots of personality. She never ever complains about anything. She takes great joy in the simplest of things. She has recently learnt how to use messenger & will send lovely messages to everyone she loves. She makes us all laugh a lot, she is in the Brownies with other typical kids & they all fight to sit beside her.

I know you are worried about money so first thing Tuesday get some forms for the Domicilary Care Allowance & fill them in. This is a monthly payment non means tested of €309 per month which will greatly help towards the costs of caring. It will be back dated from when you applied.

I have kept sane through all of this by having a little hobby for myself. That is important as you need to look after yourself do you can mentally deal with everything.

Fingers crossed that your little girl improves very soon.

Reactor

So sorry to hear that and wish you all the best OP, puts smaller problems in perspective.

12Phase

Also don't worry about Brexit. It'll take the UK several years to disconnect from the EU anyway. I'm also fairly confident that they'll try to make it as non disruptive as possible.

Ireland is likely to do some deal to maintain healthcare connections for access to ultra specialist centres and cross border health cooperation (which goes both directions)

I'm certain that in that in any eventuality, you'll be able to get excellent treatment options in another EU country using your cover too.

France for example has specialist centres that would be amongst the best in the world and you'll get plenty of support to translate and interact with staff as there's a very active Irish connection to the country and its only a little over hour away too.

There's a whole continent of world leading paediatric expertise out there so, at least take that brexit stress off your plate.

molly09

Hi op, I don't have any children so obviously have never been in this situation. I just wanted to say my thoughts are with you, your wife and your two children. It must be so devastating and heart breaking. I hope you are finding some of the advise you are getting here useful and I hope things improve for you little girl.

LegacyUser

Hi OP I have two small girls under 2. I cannot imagine what you are feeling like. I suppose I can't give you practical advice as regards the diagnosis and the future for that, but I would add that you and your wife should not be afraid or embarassed to use any support services offered by the hospital, like counselling. Or to go and seek out a counsellor of your own. I know in life you should try not to worry about things that you can't control, and there's a lot of stuff out of your control in this, so you need to find a way to cope (I won't say "not worry", because I'm sure you will about some of it, anyway). You need to have somewhere to vent, to speak your worries no matter how silly they seem, and to cry. Both of you do, preferably with someone non-judgemental to listen to you.

The best of luck to you both.

nikkibikki

Just a thought OP. check your life insurance cover. If you have serious illness cover it may cover your children's illness too.

Wishing your little baby and your family all the best.

January

Hi OP,
I am sorry to hear of your child's illness. My daughter also has a heart condition and while it would not be as serious as your little ones I found great help in some Facebook support groups. If you type ireland chd into facebook search you will find one. The other is Complex Hearts Ireland. When my daughter was diagnosed and again when she had her surgery I had brilliant support from the mothers and fathers on those pages.

There are some members who have traveled to GOSH for transplant, including a little girl with DCM.

It's such a hard time, try not to worry too much. Heart Children Ireland are a fantastic charity also.

LegacyUser

Hi
Please get in touch with the medical social worker in the hospital your daughter is in. They will be able to provide you with emotional and practical support. The Social worker will explain the E112 process whereby your child's medical cover will be covered by the state under the treatment abroad scheme. She will be able to help you with paperwork for medical cards and domicillary care allowance as well as give you advice on dealing with work and your son.
Best of luck, as one of the previous posters said, take one day at a time and try not to panic about the future.