DS has suspected diaphragm hernia, he is 16 months old.

[PIB20]

My DS had a lump suddenly show just under his rib cage, i took him straight to the GP who is referring us to a specialist. He believes its a diaphragmatic hernia. Most research i can find suggests he should have some sort of breathing difficulties etc but he has has no symptoms prior to this soft lump appearing at what seems like random. DS is 16 months old, active and funny little boy. The doctor was not insightful and didnt tell us anything other than he is referring us and it will end with surgery. Ive been a teary mess since then as it was such a shock, he is healthy in every other way but has had about 4 chest infections in his life which can now apparently be linked. Has anyone else experienced late diagnosis of a diaphragmatic hernia? Im extremely worried

I'm sure someone with more recent experience will be along shortly, OP, but just to say my DB had this when he was 2. It's apparently quite common. He had the surgery, healed quickly and was absolutely fine afterwards, never looked back - in fact Mum often forgot it had even happened, and was sometimes surprised by the photos of him in bandages in her photo albums! He's 55 now.

A friend of mines little girl had this about 18/19months old, she was very upset as well, but her daughter was completely nonplussed-the paediatrician said they saw it frequently with little ones who were climbers.

Thank you both for replying. I think its the initial shock as the hernia seemed to appear overnight @SpinningBob he does love a good climb so thats probably where it has come from. All the information we can find seems quite worrying. I think i should just try and put it to the back of my mind. Ds is my first child so im extremely protective. I was fortunate to be able to give up my job to be a stay at home mom but ive never been away from him at all. He has never even really spent time alone with DH so the idea of him being in hospital really freaks me out.

Sorry you're going through this. Are you in England? If he's admitted for surgery 1 parent will be able to stay with him throughout his stay, 24 hours a day, fold out beds are provided at night. Covid rules depending a 2nd parent can visit most of the day, but he absolutely won't be alone. Sorry if I've got the wrong end of the stick but your comment about not being away from him made me think you wouldn't be with him.

@masha17 yes we live in the UK. I know its a rather silly fear in terms of what ds is going through but i have quite bad anxiety and i have never once left him, even with dh, so its merely the idea of him being in surgery away from me.

Im glad ill get to stay with him as he is still breastfed and when we he feels under the weather its not uncommon for him to refuse to drink out of a bottle or cup and will just want to be at the breast all day, which i will imagine will be the case after surgery.

I was in a similar position with my bf son at a very similar age a couple of years ago, he underwent surgery for intestinal issues. It's not easy but try not to over think what's going to happen. I'll share my experience as it might help you feel prepared. For the surgery itself I held him in my arms until he went to sleep, only when he was asleep did we leave and we met him in recovery afterwards when he woke. You will get through this ok and your son won't remember any of it! Sending good thoughts to you!

@masha17 thank you for sharing your story. I hope your ds is ok now. Im sorry you had to go through that. Its the recovery im quite worried about. He is very active. How to you tell a 16 month old he has to keep still?

My DH is normally the strong logical on and even he is going to bits at the thought of him having surgery. It seems the only place to get support at the moment is mumsnet. No one i know has had a child who has had to have surgery nevermind this young. I dont have a huge support network anyway and its moments like this you realise.

I think all the months of over the phone consultation the doctor seems to have lost his bedside manner and empathy because it was like he wanted us out of his office as quick has possible. Were just waiting for the dreaded letter with the date on now.

It's so hard for us parents and my husband didn't cope at all well either. He's the type of person who likes to fix things and not being able to fix his son almost broke him. I'm pleased to say now though that my son has been absolutely fine since his surgery. It took him a couple of weeks to get his full strength back and in that time his body recovered. We watched lots of tv, read books and played with his toys We didn't have to consciously tell him not to climb etc as by the time he was up to it, he had recovered but equally we avoided soft play and playgrounds for a short while. I hope you get your referral soon and a more sympathetic specialist who can explain everything for you.

@masha17 thank you. Part of me wants it over and done with because the waiting is horrible but the other parts of me (illogical) wants him to not have it, as if it would repair itself.

My DH is the same. I think at this point its harder for the parents than the child as at this age they are unaware of whats going to happen. DS is small for his age only 20lbs and in 9-12 month clothes, i know some young babies go through alot more and i thank my lucky stars that its not more serious but at the same time i see him as my tiny little boy and cant help break my heart thinking that this is going to hurt him and the scars he will have on his perfect skin.

Im glad your little one is now ok, it must have been such as stressful and heartbreaking time foe both you and your husband.

I'd be very surprised if it was a diaphragmatic hernia, as with those the bulge goes up through the diaphragm into the chest, with no bulge visible from the outside. From your description, I'd be wondering about an epigastric hernia, which is rather less alarming. Though clearly impossible to diagnose over the internet.

It's not the same condition but similar. One of my DC had an inlingual hernia when only 9 months old. It strangulated whilst on the NHS waiting list for surgery and so received emergency surgery. This was many years ago.
The actual surgery my DC bounced back from really quickly - it was definitely worse for us as the parents. Do not hesitate to get your DC checked out should their symptoms recur, as prompt treatment may be necessary. Best wishes. I am sure it will be fine and as the others said one parent was allowed to stay at all times.

@nocoolnamesleft from my understanding epigastic hernias are quite central and this is to the right underneath ds ribs and it protrudes their. We have been told its diaphragmatic but has got to see another specialist which can look further into it as its believed to be a morgagni diaphragmatic hernia which is extremely rare only about 2% of people with diaphragmatic hernias have this type. I had never heard of it before so did quite a bit of research. No matter how simple or complicated the procedure is i cant help but get upset over the idea he has to have surgery at all, let alone so young. Its a rather strange one because from research online to does sound more epigastric but then again im not a doctor so wouldnt have a clue what else id be looking for. Thank you for replying, somewhat eases the worry to think the doctor may have got it wrong because you are right, it does seem less alarming than a diaphragmatic hernia.

@Justtoshare thank you for sharing your story. I really hope your child is ok now. I know what my ds is like and he will be his cheeky self in no time after the surgery, i also know im probably over thinking it and im torturing myself with hours of scrolling through the internet whilst he sleeps which tends to do more harm than good but i dont seem to be able to control myself.