For parents who experienced stillbirth/NND - anyone using the CONI scheme?

4 replies

sh77 · 02/02/2011 13:06

Just wondered if anyone has experience of FSID's CONI (care of next infant) scheme? The support seems quite useful - just wondered what it was like in practice. My daughter passed away unexpectedly after birth in April 2009. I am now 33 weeks pregnant and so, I suppose any extra support would be good.

OP posts:

helenlouisey · 02/02/2011 17:05

hi sh77

I am so sorry to hear of your loss, I was part of the CONI scheme, I haven't lost a child but my husbands cousin died of cot death and due to the fact our little boy was born premature and we were very anxious due to him being at higher risk of cot death (due to being born prem) and with there being incidence of cot death in the family our GP suggested we be placed on the CONI scheme. It was all administered by our health visitor, who was in contact with the local area manager of the CONI scheme.

It was several years ago so I cant remember in detail the initial assessment our HV did, but we had a CONI book with all my son's details in and we had a list of checks to do daily, including taking his temperature and things like that, and then my HV came at least once a week and we went through all the observations and if anything concerned us she would then discuss it with my GP and ask for her advise, for example when the breathing sensor we had went off indicating our son had stopped breathing for a short amount of time.

Also we were given a special insert for my son's red book which said if we had to take him to A & E for any reason that he was to be seen by a senior peadriatric consultant.

I found it reassuring and having the extra support did put my mind at rest to some extent. The other things I did was to buy a sensor mat and also I went on a baby 1st aid course which was run at our local Special Care Baby unit, I would really recommend one of these as it gave me some confidence I would at least have some idea as to what to do in an emergency. It was the local CONI area manager who managed to set this up for me to attend.

Helen x

louisesh · 02/02/2011 17:34

What is this? Never heard of it? My dd was stillborn at 41 weeks in October 2010 and i m now ttc again.

Original poster

sh77 · 02/02/2011 18:46

helen many thanks for sharing your experience. It is really useful to hear what others got out of it. I emailed the local co-ordinator and hopefully she will reply soon.

louise so sorry for your loss. CONI is a scheme is run by FSID, which gives support to parents who lost their babies unexpectedly once their next child is born. It seems really useful e.g. frequent checks by health visitor, weighing scales, breathing monitor, resuscitation course, rapid access to paediatrician if baby is unwell. Best of luck with TTC and keep this scheme in mind. Another thing to remember is to ask your ante natal clinic if they can put you in touch with perinatal services (if your hospital has one). It has been invaluable for me in terms of psychological/emotional support throughout the pregnancy. You will, hopefully, be monitored super-closely.

fsid.org.uk/page.aspx?pid=329

OP posts:

louisesh · 02/02/2011 21:29

Thanks very much sh77 i will bear all this in mind.Yes, our consultant and midwive are all excellant.I have no complaints about previous care or worries about future care package.

Sorry for your loss.Best of luck hope all goes well XXX

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