Welcome and so sorry about your baby . A stoma nurse should be working with you and the baby . Having a flat stoma is hard to work with . Is he using a Convex wafer ? How about Stoma powder and Brava barrier sheets to protect  skin better . 

If this is going to be a permanent Ostomy consider having a stoma revision so a longer stoma is made .

HI Jamiesmom, Firstly welcome and glad to see you have found Erics site, A low stoma requires a convex wafer which has a ring which forms better contact to the tummy. are yous getting support and help. suggesting the convex may not be suitable for a baby. Plus how are you and Dad handling working with the stoma. a wee while back a parent of an older child was on and Eric was going to see if he could get more parents in the same situation so advice and experience could be shared. Its great to hear your wee man if doing well, that's a blessing. Best wishes and you will get help and answers.

https://en-gb.facebook.com/Hirschsprungs-Disease-Family-Support-Group-84307459345/

http://www.hirschsprungs.info/

May be helpful.

Hi Jamiesmom, was just about to head out the door and a thought occurred (get just one a day) Babies = powder, when putting on a new wafer be careful that the skin is dry and free form any thing which may affect it sticking. even stoma powder blow any surplus away

Hi Sharon, welcome to the forums!

Pediatric ostomy care is similar in some ways, but different in other ways when compared to adult care. I second Bubble's suggestion to work with a stoma nurse to make sure that Jamies is using the best product available and that the technique to apply the wafer is done right.

Have you been in contact with any of the suppliers to see what kind of pediatric products they carry? I know Coloplast has some really nice peds ostomy appliances.

Keep asking questions - and work with a professional until Jamies skin is looking better.

Good luck!!

Hi Sharon and welcome to the group . Sorry to hear that Jamie has to start out so young with this I'm sure it is tuff on you and your husband trying to learn about it . But you have come to a good place here you can get help from some good people who know what there talking about .

Hello sharon,

I am happy you have found this group and although I don't know if there are other very young ones ( or their parents) among us) I hope we can find answers and offer support. There is someone else with an older child, but I don't know what age. An infant will certainly present some different challenges, but I had noticed all the available things for babies so there must be some good solutions out there. For all of us it sometimes takes a while to get it right thing working.

My dear Jamie, Welcome to this world of ozzzzzzy What's!!  From what I hear from your great Mom, your doing rather well now.  Kinda had a rush-ostomcy start in life huh?  Well, I am sure that you will guild through this better than most adults..  Once when your mom and dad figure this all out.. They love you so much and will find a way to help you right now.  Also in the future.. IF your not on your bike peddling like crazy away from them..  I have a feeling you will be potty trained rather early.. :-)

First NO BABY powder mom.. Try to let this air out for some time.  And have you tried a children's hospital that deals in this? (mostly for your own sake and Jamie's too) If your in the USA, I hear that Cleveland, Ohio has a good ostomcy team-at least from what some adults have told me in my support group, and they got their surgeries there from Ct. where I am from.. still here. How about calling the companies that service samples? Coloplast, etc.  Maybe they could get you some info. of other mom and dads dealing with a baby.  I am sure that this is so hard on you and I wish you all the best..  But that little guy will not only be the light in your eyes but in others as well!

Blessings, Marcie.

John, how kind and secure/with proper info.  you are to help Jamie's mom with this information..  I checked this out and it something Sharon can go with at this time..  Good luck Sharon with the every day changes of Jamie-as there will be many as he grows so much during these many months..  And years.  So hard to try to get to know your new born cries of what is bothering him/her-now this?? But, a mom knows.. Get some sleep mom & dad, This little guy will surive better than u know-- The diaper part will be much I am sure.. Bath times may be many-NO SOAP- etc.. He will enjoy his baths.. and splash with glee!!!!!!!!!! M.

Hi Sharon, Again-- Marcie here-  How about a picture of Jamie?  I/we would Love to see this beautiful child of yours.. Blessings, Marcie.......

Thank you all so much for your advise and encouraging words. We live in Dubai and unfortunately they do not have stoma nurses here. All my knowledge on stoma care has been taken off the internet alone. It is very difficult without the help care here. Supplies are also very limited hence our only option is to purchase certain supplies via Amazon (which some doesnt ship to Dubai either).

Ive just recently purchased Cavilon barrier film to protect my babys raw skin (any advise on usage would be great) and we are currently using Convatec Duoderm for extra barrier support but this still doesnt seem to hold. Ive also tried sticking it to the raw skin but it seems to make the leak worst. Same goes for the moldable rings.. What am I doing wrong here?

@john68 - Ive tried to get in touch with the support group on FB but it seems they're probably no longer active?

@marcie - thank you for the encouraging words. How do i attach a picture here?

Thank you again!

Hi Sharon,

http://floridahc.net/service/colostomy-ostomy-care/

http://gulfnews.com/news/uae/health/girl-finally-finds-cure-in-uae-1.993055

https://contact.org.uk/medical-information/conditions/h/hirschsprungs-disease/

The support group may be UK but they may have contacts for you that could point in the right direction

Hi Sharon, Just throwing out ideas here. Getting supplies. May be contacting ostomy companies directly and seeing if they could or would know of a company who would ship to Dubai. If you don,t mind me asking where was Jamies surgery done, and the skin problems may need to be seen by a specialist to be treated. Some skin creams will leave an oil on the skin and the wafer will not stick properly. The products you are using are they suitable in size for a small baby. Getting the skin sorted will be a big step to getting leaks sorted.

Hi Again Sharon.

https://www.anglopacific.co.uk/shipping-to-dubai.htm?utm_source=bing&utm_medium=cpc&utm_campaign=2.%20Dubai%20%2F%20UAE&utm_term=%2Bship%20%2Bto%20%2Bdubai&utm_content=Dubai%20%2F%20UAE%20Shipping%20General%20%2F%20Companies%20-%20C-S1-D

As for the picture?  That I cant help u with.. Maybe John? 

Hello- John?? Robert/ Eric?

Hi Marcie, Not by bag baby! when it comes to thing like that am a complete gravy ring

If you are from another country Can you go to your home land for a month or so to get better Ostomy care to get this situation under control . That way you can stock up on supplies and bring back with you .  Can you ask family members to send you stuff ? Bless your baby 🙏🏻💕

Here is the link to the Ostomy Nurse website. Maybe you can call the 1-800 number and speak to someone. See if you can work with a Ostomy nurse via Skype or FaceTime. It's worth a try . Fingers crossed 🤞🏼

http://www.wocn.org/general/?type=CONTACT