Tom's Hirschsprung's Podcast

This week I am joined by 2 guests as Lauren and Kieran talk about their 3 year old son Freddie, and his journey with Hirschsprung's.Lauren talks through Freddie's 3 surgeries and Kieran talks about stoma care, as they both share their thoughts over the last 3 years.Enjoy the episode!

Just 5 1/2 months after giving birth to her fourth child, Ann-Marie joins me to talk about her sons journey so far with Hirschsprung's.We go through the last 5 1/2 months, with helicopter rides, thunderstorms and a sea of emotions, as Ann-Marie shares her thoughts on that time.Later in the episode Ann-Marie shares some tips and tricks that have worked for her son Christopher when it comes to diet and stomas.Enjoy the episode

Bria chats to me about her 3 year old son and his story with Hirschsprung's. Having had one child already, Bria and her family had no idea that Hirschsprung's existed as we talk through procedures and the pull-through surgery.Later in the episode Bria talks about her informative TikTok's explaining various points on Hirschsprung's Disease and how this has helped families from all over the world.Enjoy the episode.Follow Bria - Instagram - @itsbeeingbriaTikTok - @beeingbria

Musician and Composer Tony talks about his life with a variety of conditions, including Hirschsprung's.Having interviewed Tony's brother James, we discover that both men's lives have been very different, with Tony also being lactose intolerant, having type 1 diabetes and Hashimoto's disease.We also chat about Tony's accomplishments in music, as well as what he's currently working on.Follow Tony:-Instagram:- @tonybrattolicomposerTikTok:- @tonybrattoli

A tricky and emotional episode as Shakeyra tells her story with Hirschsprung's from the beginning. Towards the end we talk about what good days and bad days look like for Shakeyra and her Hirschsprung's.Follow Shakeyra - @shakeyraloving_life24

Today I chat with Ben Jevans and Georgina Merckel to make a special announcement regarding a Hirschsprung's event on Saturday 4th July 2026.Listen to find out what it is and all the details.Ticket link:-https://www.ucl.ac.uk/population-health-sciences/events/2026/jul/ucl-hirschsprung-disease-awareness-dayHD study discussed in the episode:-https://fg.bmj.com/content/early/2026/01/02/flgastro-2025-103478.info

Not only was Jack diagnosed with Hirschsprung's Disease, (a 1 in 5000 chance) he was also diagnosed earlier with Duodenal Atresia (a 1 in 6000 chance) thus making one of the rarest combinations ever seen on the podcast.Annalise talks through Jack's story, including his very premature birth and delayed diagnosis, whilst Annalise later talks about how he is thriving now.Follow Annalise - @annalisekatherine

An extraordinary story unfolds as 24 year-old Hana wasn't diagnosed with Hirschsprung's until 22 years of age, having gone through many years of frustration and gaslighting.We also chat about ostomy surgery and how Hana's life has improved since the operation 2 years ago.

Charli tells the story of her 3 year old son with Hirschsprung's, with a difficult initial diagnosis, but a positive look towards the future.Despite a hospital mix-up, and being told that Hirschsprung's was 99% not in Teddy's future, Charli advocated hard and listened to her motherly instincts to make sure she had the right outcome for her child.Enjoy the episode.Follow Charli - @charli_warriner

Hannah joins me to talk about her 5 month old son Oliver and his story with Hirschsprung's. With no family history of Hirschsprung's, the diagnosis obviously came as a shock, especially with a bout of Enterocolitis in January.Hannah also explains her thoughts and feeling on surgery as well as what's next for the future.

James is an Actor and Screenwriter from LA, who shares his incredibly raw and honest account of his life with Hirschsprung's from the very start.With over 20 surgeries before the age of 6 as well as his older brother having Hirschsprung's, James mentions how this affected him in later life as we discuss the mental impact of the condition.Please enjoy the episode

In this episode myself, Faye and Elle will talk about the new parent support group, specific to Hirschsprung's that's coming soonWe will discuss:-- What is the parent support group- How did it all come about- How is it going to workPlease enjoy the episode

After having 3 children, Kayleigh knew something wasn't quite right when her 4th child Micah, hadn't passed meconium. Kayleigh alerted the doctors at her local hospital before being moved to the specialist hospital, Alder Hey.Kayleigh talks about her emotions before, during and after the procedures as well as what signs to look for if you suspect that your child has Hirschsprung's.Finally we talk about Kayleigh's TV appearance in 2021 and 2023 for ITV, as part of the Matalan pj's collaboration, which is now in it's 12th year.Follow Kayleigh - @kayleigh_acquah

After giving birth just 11 weeks ago, Sarah joins me to talk about the whirlwind of the last few months!Sarah is also a Nurse Practitioner, specialising in gastroenterology, so comes at the subject of being a mum with a Hirschsprung's child from a unique perspective.With Leo's surgery in a couple of weeks, Sarah talks about her anxiety as a new mum preparing for his pull-through.

Emily tells the story of her 5 1/2 year old son, who is also a twin, and his journey with Hirschsprung's Disease. We talk about the late diagnosis, and how parental instinct kicked in when Emily and her husband realised something wasn't quite right.A difficult experience with salmonella a few months ago kept Leo in hospital for 5 days as Emily recounts how difficult this was for her twins.Please enjoy the episodeFollow Emily - @theemilyarner

We follow straight on from the first part as we chat through the rest of Elodie's Hirschsprung's story, including Laura's family history when it comes to this condition.As we talk through the family history it shows how different Hirschsprung's can be in each individual.

In an emotional first part, both Laura and Ed tell the story of their daughter Elodie and her remarkable Hirschsprung's battle.We start from the beginning with a litany of conditions that Elodie was born with including, Congenital malrotation of Intestine, Ultra-short Bowel Syndrome and Long Segment Hirschsprung's Disease.We talk about how all of these conditions were discovered and the procedures that took place in order to help Elodie.This is an episode full of resiliency, with part 2 out next week

Karen talks about her 19 year old son Kai, and his experience with Hirschsprung's, Autism and ADHD as her starts to find a career.We chat about Kai's major passion in life of creative writing, and his determination to succeed in this field.Follow Karen:- TikTok - @embracewellnessclinicIG - well_its_k

**** NEW AND IMPROVED****This is the complete introduction of my podcast covering four different topics:-1 - What is Hirschsprung's Disease?, including symptoms and potential treatments2 - Who am I?3 - Why am I doing this podcast?4 - What to expect from the show?This intro is far more relevant than the original made in 2024, and will hopefully give everyone a better starting point.Follow me on Facebook, Instagram and TikTok - @toms_hirschsprungs_podcastContact me on socials or via email - [email protected]

Multiple time marathon finisher and Bloomberg CFO Mark Schulz, joins me to celebrate the podcasts second birthday as he talks through his extraordinary family lineage dating back to the 1800's!As well as having short segment Hirschsprung's, Mark is also a father to his 3 year old son Remy who has Total Colonic Hirschsprung's, and we talk about his role in making sure that Remy is a happy, healthy child.Mark also provides an update from his wife Sarah's episode on the amount of money raised from the 5K Race For Every Child, which will go to providing vital supplies for children with Hirschsprung's Disease.Enjoy the episode!

Professional Doula and mum of 4, Tiffany, joins me to talk about her son and his Hirschsprung's diagnosis.A very interesting story of Hirschsprung's management without surgery, and Tiffany's reasons for doing so. We also chat about potential stem cell therapy and what the future may hold for Hirschsprung's patients moving forward.Enjoy the episode.

Gemma bravely shares the story of her 11 month old son Rowan, as we delve into the often unspoken topic on parental mental health when it comes to having a child diagnosed with a complex medical condition.We also talk about how to find information on Hirschsprung's and the importance of having a community, as it can be a very lonely place for parents.Please enjoy the episode!Merry Christmas!!!

With no family history of Hirschsprung's Lillie talks through her son's 8 month journey with this condition.We discuss hospital life, and how to navigate the challenging medical terms of a rare disease, as well as passing time when it comes to surgery.Both Lillie and her wife had never heard of Hirschsprung's, but after some initial difficulties we talk about how well Oakley is doing now.

I continue my chat with Jess as we take a greater deep dive into her life and living with Hirschsprung's Disease.Within this episode we will chat about living with a stoma, and the importance of having a community that understands this.Please enjoy the episode

Olympic gold medallist and former world record holder, Duncan Armstrong, joins me to celebrate the 100th podcast episode as we talk about all things Hirschsprung's and sport.Duncan reveals details surrounding his Hirschsprung's that he has never shared before, including a family connection and how he coped during childhood.We spend the majority of the episode talking about Duncan's greatest sporting triumph, his Olympic gold medal, including the mindset he had going in and the feelings during and after.Enjoy the episode!

A truly remarkable journey unfolds, as Jess takes us through her life from the beginning. Jess will take us through an overview of her various conditions, including Hirschsprung's, Diversion Colitis, Vertigo, Complex PTSD, Autism, Bipolar Disorder and Tourette's!The first part of Jess's story is one of resilience, which will continue next week in part 2

We start this episode with Courtney's misdiagnosis of Encopresis instead of the Hirschsprung's she actually has. Unfortunately Courtney experienced medical gaslighting from her GP with a host of excuses, which led to life saving stoma surgery.Listen to a journey of resilience and self-advocacy, as well as a battle to raise awareness for Hirschsprung's.

Donna and I chat about PGD (Pre-Implantation Genetic Diagnosis) and how she and her husband went down this route when they had their child.Donna's 20 year old step-son has genetic Hirschsprung's , so Donna and her husband went through a PGD route so that we didn’t pass it on and stopped it in our family line. I appreciate that this can be a controversial and potentially divisive topic, but I felt as though this was an important aspect of Hirschsprung's to share.Please enjoy the episode.

Sydney chats to me about her 17 month old daughter, Loretta and how despite the early difficulties and uncertainties she is thriving now.Having also had multiple trips to the specialist hospital for Enterocolitis as well as a suspected perforated intestine, its been quite the year a half for the family so far!Enjoy the episode!Instagram - @Simacek_28

Ollie returns to the pod to talk about a few important subjects as well as an update on his life since we last spoke a few months ago.The episode will cover:-Fitness tips from his aerobics classesHow a vegan diet for 2 weeks affected his Hirschsprung'sHis new business venture to help women's fitness for both pre and post pregnancyPlease enjoy the episodeFollow Ollie - @bigfriendlypersonaltraining

Sandeep talks about his son's Hirschsprung's condition, we talk about diet, medicine and treatments.This is a slightly shorter episode but it still packed with plenty of interesting topics that I hope you find very useful.Enjoy the episode!

Stacey from Rare Patient Voice joins me to talk about the vital work that the company does in supporting rare and non-rare conditions.We chat about how the business was formed and how it has grown many times over to be the world's leading medical research company.Stay tuned to find out how you can be paid up to $120 for filling out a survey using my personal referral link below.https://www.rarepatientvoice.com/rp/tomshirschsprungspodcast

Sarah talks about her son Remy and his experience with Total Colonic Hirschsprung's Disease. During the episode I also find out the family dynamic when it comes to Hirschsprung's, and why it was very surprising when the hospital dismissed Remy's chances of HD.Around the mid-way point we chat about the Race for Every Child coming up on 18th October, which is a 5k event to raise money specifically for parents who need supplies such as Ostomy bags, sprays, wipes etc. - a very worthwhile cause indeed.If you would like to donate please use the link below:-http://giving.childrensnational.org/goto/RemySchulzEnjoy the episodeFollow Sarah - @snovatt21

An inspirational story of resilience and perseverance continues, as Laura shares all about her latest business venture 'FYN Coaching' or 'Finish Your Now Coaching' The passion for coaching and seeing others succeed is evident in Laura's voice from the outset, as she shares some learning experiences in the last couple of months since becoming qualified.Join us again for part 5 in a few months time.Follow Laura - @ibd.laura.fit

Paraglider and Metal Artist, Wim Predhomme joins me to talk through his life with Hirschsprung's, including some of the highs and lows that come along with the condition.Wim chats through various parts of his life, including how he copes with everything that Hirschsprung's throws at him and his love of paragliding.Enjoy the episodeFollow Wim - @wimpredhomme

Some very important topics are discussed in today's episode, as I chat with Saffire about her daughters diagnosis of Hirschsprung's 9 months ago. During what was undoubtedly a very stressful and worrying time for all the family, the miscommunication between hospital staff was the last thing anyone needed.We also talk about parental mental health and how it can be affected by having a child with a chronic illness.Follow Saffire - @papasaff

Sadie joins me to talk about her 4 year son Cody and his Hirschsprung's story. We start the story when Sadie is 10 weeks pregnant and she has a test for Cody that comes back as 1 in 8 chance of her son having Downs Syndrome.With Cody being Sadie and Andy’s second child, she knew what to look for and could feel that things were not as they were supposed to be.This all takes place during lockdown/covid times as Sadie and her husband Andy navigate the first few months of Cody's Hirschsprung's.Follow Sadie - @sadegoldthorpe

We start this episode 7 months ago, Lexi has just given birth to her third child, Emmett and like many people, has no family history of Hirschsprung's and has never heard of the condition!What follows is a roller-coaster week of emergency rooms, out of body experiences and a speedy trip to the NICU, with doctors 99% certain of Hirschsprung's.A fascinating recount of the last 7 months, with lots of hope for the future.Follow Alexa - IG - @latelywithlexaTikTok - @latelywithlexa

2 generations of Hirschsprung's are discussed with Kirstie and her daughter Aubrey, we mainly chat about Aubrey's journey with TIA (Total Intestinal Aganglionosis)Aubrey chats about her condition, including how she explains Hirschsprung's to her friends and her admiration for a fellow Hirschsprung's warrior - Zoe Colletti.Please enjoy the episodeFollow Kirstie - @Kirstie8811

Kelly chats to me about her son Kellen, who has Hirschsprung's and is 7 and half years old. In this episode we discuss the vital importance of mothers intuition and the need for this intuition to be addressed, with Kelly's son not being diagnosed until exactly 13 months of age.We also discuss Kelly's journey to find treatment as well as the events that led to the decision to have the MACE (ACE Malone) surgeryPlease enjoy the episodeFollow Kelly:-Instagram - @kelly_kronowski TikTok - @kellyk6212

Gemma and Carl discuss 3 generations of Hirschpsrung's with a surprise genetic twist!Carl, Gemma and Gemma's daughter Jessica all have Long Segment Hirschsprung's despite Gemma being the oldest of 6 children and Jessica being the youngest of 3.They talk about their lives and how Hirschsprung's has affected them in different ways.Follow Gemma:- @nelliesartist

I'm joined by Anna, this time from America. Anna talks through her son's journey with short segment Hirschsprung's Disease and we cover a wide range of topics throughout the hour + long episode.Topics will include:-- Mothers intuition- Seeking quality care- Different treatment paths- The importance of community support Please enjoy the episodeFollow Anna - @themosthopelesstourguide

Starting straight from the last episode, when Amy's daughter had her stoma fitted, we talk about how stoma care differs from country to country.With the first 6 months being incredibly difficult Amy discusses how important having a support system is whilst abroad, Amy uses her knowledge as well as her medical friends and family to achieve the best outcome for her daughter.Please enjoy the episodeFollow Amy - @lifeofamy34

China is our next stop as I chat with Amy all about her daughter's diagnosis of Hirschsprung's Disease from Zambia to China via the UK.From doctors being puzzled as to what might be wrong to having to adjust to the Zambian healthcare system, this two part special goes through a variety of situations.Please enjoy the episodeFollow Amy - @lifeofamy34

In todays episode, conducted from the hospital room, Kaitlyn chats to me about her 5 year old daughter, including topics such as diet, Hirschsprung's resources, procedures and parental health.Kaitlyn explains the journey that her family have been on as well as sharing a wider perspective on their Hirschsprung's experience, both positive and negative.Please enjoy the episodeFollow KaitlynTikTok - @mamaslaughter

Libby shares the story of her 2 year old daughter with Hirschsprung's from the very start.We begin with Libby being discharged from hospital with her daughter, despite Darla not passing her meconium and having coughed up green bile (classic signs of Hirschsprung's). Thankfully a visiting midwife became her saviour as she was transferred to a specialist hospital (Alder Hey), where her daughter could receive life saving treatment.Later in the episode Libby explains the need for mothers to be offered support if your child has gone through a condition such as Hirschsprung's, as it is a very traumatic time for both parent and child, especially when it comes to surgery.Please enjoy the episode!Follow Libby:-Instagram - @ldarcie_TikTok - @libbygirlmum

With no family history of Hirschsprung's, Taylor discusses her journey so far about her son Bowen, who is 7 months old.Bowen was diagnosed with Hirschsprung's despite passing his meconium at 3 weeks old. Taylor talks through the story from her own point of view as well as sharing handy hints and tips on TikTok.Later on we talk about how well Bowen is progressing and Taylor's thoughts on the future.Please enjoy the episodeFollow Taylor:-Instagram - @taylammonds_TikTok - @tay_l0r

In this episode we follow on from last week, where we talked about the new Hirschsprung's website, www.hirschsprungsdisease.co.uk and how this all came to be.Later on Georgina gives us an update on her son Ffredi, as well as some valuable hints and tips that she has learnt so far.Follow Georgina - @livewithgeorgina

Nearly 7 months after her last appearance, Georgina talks to me about her exciting new project - a UK dedicated Hirschsprung's website!In the first half of the 2 part special we delve into the stats and current research surrounding Hirschsprung's, especially in the UK as well as interesting studies taking place including HAWAII, BEACH and ALOHA.Tune in next week for part 2.Follow Georgina - @livewithgeorginaVisit the Hirschsprung's UK website:-www.hirschsprungsdisease.co.uk

Actor and personal trainer, Ollie chats to me about how his career is going as well as some funny stories along the way. Ollie was diagnosed with short segment Hirschsprung's Disease and has had 5 surgeries, but he was determined that this would not stop him from pursuing his acting dreams.Later on we chat about scars and body confidence as Ollie has recently taken part in his own photoshoot, to promote his business.Follow Ollie - @bigfriendlypersonaltraining @bfthespFollow the podcast on Instagram, Facebook, TikTok, Youtube and Reddit - Toms Hirschsprungs Podcast