My partner, Natalie gave birth to our handsome son james (200310) 5 weeks early after being diagnosed with polyhydraminos which gave her alot of discomfort throughout the pregnancy. He was diagnosed with TOF/OA and larnyxmalachia, which is now trachemalachia with added septacemia (excuse spelling). Any ways he had the repair and two dilatations at Chelsea and Westminster hospital. After 7 weeks he came home. The first day home we had to call ambulance as he choked really bad but was ok, so sent home. I got myself some training in resus and choking which was rushed as I had the 2 kids with me and had to pick the eldest up from school.

My partner due to all the above was in a mental hospital suffering post traumatic stress and post natal depression at the time. The next choking episode was caused by the bloody health visitor telling us off about his weight gain or lack of. I had to give mouth to mouth and lucky enough I saved his life. The hospital said she was wrong and reduced the feeds and frequency.

This settled him but about 1 month later he had a contrast that indicated he needed another dilatation. I went back to work for a week but before we made it to the appt at chelsea he had a major blue moment without feeding (in his chair) and I had to give mouth to mouth again and chest compressions, luckily enough the ambulance came just in time to finish the job (Thank the gods). Anyway he is in great ormond st at this time under going lots of studies and investigations, this whole saga is putting a huge strain on our lives, I have no car, 3 other children and have been off work for 3 months +. I may lose my job. Also the CPA and normal police (child protection agency police) also had to come round to take statements etc which was frustrating adding to the pressure.

My partner and I are starting to feel let down by alot of people that have been involved in this. We rec’d no info as to the risks of losing his life because of the choking/blue moments, it wasnt diagnosed in the preganancy thus not preparing us for the stress, bad advice from the health visitor and lack of training/support at home?

Is this normal or have we missed something? We are trying our best to keep things running smooth for our 3 other children that are all quite young. Currently nat is staying at GOSH as its the only option we have and it is killing us. (by the way GOSH is top notch and more supportive than our local and C&W hospital)

This post is has no real direction more of a rant! I am still shaking inside from having to revive him the first time. The emotional stakes are quite high having to do cpr on your own child!

is this normal? We just want the best for our family.

Hello,

I just read your post and I really really feel for you. My baby boy is now 1 year old and was not diagnosed as having TOF/OA either and it is ver traumatic what happens when you find your little baby is unable to feed and then the investigations, surgery etc, its a LOT to get your head around! My husband said I sobbed in my sleep for weeks, i wasn’t aware but he would wake up becasue of it!

Regarding the help you should have, when we got sent home, we first went to our local hospital who arranged for Benjamin to be on specialised milk to give him extra calories and nutrition and thickeners to deal with reflux (very common in TOF/OA babies). They made sure we had resuss and chole training and gave us a ‘bliss’ DVD to watch at hme as frequently as we liked that went through baby resuss to refresh our memories. In addition to this we were given a community nurse who issued us with a suction machine and a apnoea monitor for home ‘just in case’ and she would visit daily for the first few weeks of being home so that if anything was worrying us she could put our mind at rest or speak to a consultant if necessary. Also…we were given a ‘yellow card’ which is basically a pass that lets us go see the hospital whenever we need to, straight onto ward, no A&E and no GP! Our communtiy nurse was brilliant she even brought the resuss dolly round to our home and went through it all again.

Benjamin tended to choke on milk when he strictured but we were lucky not to have to resussitate, it must have been so scary for you, PM me if u need anything, if you’d rather talk to my husband then leave a number and I will get him to call you. Where abouts do you live? Sounds like you need lots of support and have none, there must be a community nurse available for you. I hope things improve!

Are the blue episodes the tracheomalacia, if so, I am sure Gt Ormand street will get your little man fixed up and then you wont have these sscary times anymore!

We are coming to GOSH on 12th July if u are still there then we may see you!

Louise - Mummy to Benjamin, 1 year old, 4 dilatations, mild tracheomalacia, severe reflux

Hello
I hope James is ok. Amy is 5 and I still trying to get my head round the eating operations etc… I also have 3 other children
This is a scary time when you all need friends and support and remember you can chat on here anytime, we all on here for you all. I do not think your missing anything your doing the best for your child and always remeber that.

Keep in touch and let us know how you are all doing.
Joanne

hi,
just thinking about the work side of things, you will be entitled to parental leave if you have worked with your company for more than a year, and the parental leaves entitles you to 13 weeks off a year (it is usual unpaid though) and if your child qualifies and gets disability living allowance then that entitlement goes up to 18 weeks a year. and it means your job cant sack you for having to be with your son when he needs you.
(also if you do get disability living allowance you may also be entitled to carers allowance)
dont though if that is of any help to you, the only i know is i looked it up on http://www.direct.gov.uk cause my husbands work was being a little silly with him, so once he reminded them off parental leave, they started to behave themselves a little bit more.

Just to clarify the Parental leave it is upto 13 Weeks for a child under 5 and upto 18 weeks if Disabled up to 18 years (meaning receiving disability alowance)
this is not per year but total amount of time.
I know what you mean by the blue episodes as Nathan had a modified nasopharyngeal airway until he was 10 months old to keep his airway open.

in terms of Support you will notice that it varies considrably between hospitals and GP’s. we have been lucky in that the John Radclife hosptal controls the care that Nathan gets and they are terific however our local hospital are nervous of his issues and always panic about it, I had forgot how different the knowledge is until a few weeks ago when we had to use our open access ticket and when the SHO came in I could see he had downloaded stuff about nathans conditions including TOF from the internet before seeing him!.

The best advice I can give is to read as much as you can and learn about Tof/OA and any other issues so when you get advice from “specialists” you can make an informed decision.

secondly if your not happy with anything then get heard by whoever needs to respond and if your not happy with it push it.
This is the one thing that I found difficult to do but annon and others who post here reminded me that we are the advocates for our children and we need to make sure they are heard.

I know what you mean by the blue episodes as Nathan had a modified nasopharyngeal airway until he was 10 months old to keep his airway open. Debs sister visited us once in Hospital before it was fitted and he had episode which the SCUBU staff had to deal with and it took her ages to come back and visit. We had to receive basic training on CPR before we were allowed out of SCBU which i then reinforced to other family members using equipment I have for teaching it myself.
we still have a sat monitor and suction machine for when Nathan has a cold and you should insist on this if their is a chance of it being needed.

if you ever need someone to chat to from the Dads perspective then pm me and I will call

regards

Darrell

oh, i really feel for u all as a family, my son benjamin,now 6 months old,diagnosed tof after 2o weeks scan, was born long gap oa, repair at 7 weeks, he was born in st georges hospital tooting london, 60 miles from where we live, i also have a 5 year old son, and not alot of family local at the time to help! we can home at 10 weeks then back in again a few weeks later for another 4 weeks,  during all this time, i could not stay at the hospital, also my partner had to work and i had to be there to take my other son to school, then i would make the 2-3hr journey to the hospital, for about 4 months i felt like i was living in a bubble, and was on the verge of a breakdown, as it just didn’t seem like anything would get better! we don’t have alot of local support, but have learnt alot from being in hospital, and also most of the time us parents know best! however, we haven’t been in hospital for nearly 3 months now, and i never thought this would happen, so things do get better, and evryone one on this site is always here for support if u and your family need it xx

WOW!

Thank you everyone for your kind replies. It feels easier to know that my family is not alone in this.

James is doing ok, still at GOSH and had an open Aortopexy today to correct the severe tracheomalachia, he recovered well. So dilatations next I guess.

We are getting help with everything now, I realise that I am james’ voice and Nat’s pretty much and that they need me to be strong, very strong. Just hope he is a good carer when I am old with stress induced senial dementia!

Great Ormond street is top notch, I see glimmer of light at the end of this long tunnel.

Thank you all so much!

Hi Nat & Dave
Am so pleased to hear that James is doing ok and you are now seeing some light at the end of the tunnel. My story is nowhere near as dramatic as yours, but I have been thinking about you and your family a lot and hoping that things get better for you. It sounds like you have a lot on your plate with not just worrying for your son but also for your wife. Both of you have been through hell. Make sure you have someone you can talk to about everything (even if it is just on hear) I don’t think there is any replacement for that. The most important thing is to feel like someone knows what you are going through. Eva is 3 now but for the 6 months I felt so isolated, it was only when I met some other people that had been through similar that I started to feel more in control. It sounds like you are now getting some of the help you need….I wish you and your whole family so much luck and please make sure you keep us informed of how things are going both good and bad!!! We love good news stories on this forum thats for sure!
All the best
Claire

An update.

Natalie and james are doing absolutley great!!!

James has had one blue moment since his aortapexy which was a ‘blip’ we hope! He is now 12lbs and nearly 6 months old!

He is a cracking kid and his brothers have taken to him very well!

Although he did get a cold/chest infection whcih meant we was awake all night patting his back etc etc but hey ho he is doing great, I would rather stay up all night with him than have to go through the resussitation nightmare again.

Natalie is getting back to herself and is full of smiles and I am in admiration of her commitment to recovering from her depressions etc

What a journey!

I think I can relax a bit now lol

Excellent news. Glad everyone is well