Poppy Lou Fund

Poppy Lou's Story

On the 14th of November 2021 our little Poppy Lou aged 4 went in for a relatively simple routine operation to have an ileostomy. We were advised by three consultants that this would improve her quality of life and have less long-term traumatic impact on her mentally than her current wash out regime for her chronic constipation. She had her surgery on the 15th and seemed to recover well. However, 3 weeks later the ileostomy was still not working and she was becoming very unwell. She was taken back to theatre again to review the stoma on the 9th December and this time she came back with a bowel perforation and an infection which made all of her stomach wounds reopen, including the one holding her stoma. At this stage, she had not eaten for weeks and was not yet on any nutritional feeds (TPN) so she became severely malnourished.

Even though her condition continued to deteriorate and she was left home just after Christmas. Within a few weeks, we brought her back to the hospital with a swollen belly and vomiting. She was rushed to emergency surgery and ended up losing a large section of her bowel as it had become strangulated and the tissue had been starved of oxygen and died. She came back after this surgery with 2 stomas side by side and tubes in her nose, her bladder, several I.V.s etc and needed two blood transfusions, iron infusions etc. She eventually began to recover and move about and 3 weeks later her stoma prolapsed, which is where the intestine basically falls out of her body but it's inside out.

This was operated on and stitched. Which prolapsed again within a week. She had the whole operation done all over again and the stoma was revised in May 2022. So at this stage her intestines had been operated on in November, December, February, April and May (not including minor surgeries in between where she had her long lines, picc lines and ultimately her Hickman line put in to nourish her with the TPN to keep her alive.) From February to May, Poppy's Dad was trained to do her sterile procedures needed, to allow her to come home so we could continue to care for her and try to get some semblance of a life back for Poppy and our 8 yr old Jacob.

Even though her operation looked like it had gone well, she prolapsed again 3 weeks after. Over the next few months we tried our best to find her answers, with little or no help from her team in Crumlin. We found an expert surgeon in the U.K. in Great Ormond Street Hospital, who has experience in children with rare bowel and dysmotility issues and who have had surgeries that haven't gone to plan. We struggled to get our team in Crumlin to refer us so we had to take matters into our own hands and go to this surgeon privately in order to try get Poppy's case reviewed and to try get some answers or at least options for our little girl. We kept pushing and eventually managed to get a referral with the help of a local counsellor, a T.D and the team in Great Ormond Street.

However, at the beginning of November Poppy became very unwell. We assumed she had gotten a virus or bug, but we brought her to the hospital to rule out anything else. Unfortunately, it was a twisted bowel and her intestines had become strangulated again very high up. She ended up having another emergency surgery where this particular surgeon managed to save her intestines as she was minutes from losing her entire bowel.

We lived for a few weeks in secret hope and prayed that this was the answer to all of her issues.

However, she began to prolapse (intussusception is what they're calling it now, because the internal bowel is coming out through the stoma ) again and had to be rushed to Crumlin again in January. This ileostomy which was supposed to be a better quality of life has now left our girl in a constant life-threatening condition. While surgeons here have said that she cannot be left with a life-threatening stoma, they also have said they do not have any answers or plans for her.

We were advised that this was the best option for Poppy. That it would give her independence. When we originally asked what the risks were and what would happen if it didn't go to plan, we were assured that she was in the best health and that this was the best time for her to have this operation, that she was not a likely candidate to be at risk of it going wrong and that she was definitely not a candidate for TPN.

We could never have imagined that nearly 16 months later she would have gone through such a horrific experience, so many operations, hospital admissions and have been let down so many times. We definitely never imagined we would have to fight so hard to keep her alive and that we would have come so close to losing her so many times over this journey.

Although Poppy always has a packet of crisps in her hand (for licking, cos she craves salt!) Poppy is now dependent on TPN which is fed through a hickmann line straight into her heart, for 12 hours every day and now she needs fluids too because she is losing so much water and blood through her stoma. Her ileostomy has to be constantly watched for changes in colour or other micro signs of strangulation. Her intestine is constantly hanging outside of her body inside out. We are constantly trying to preserve the amount of bowel she has left to ensure she doesn't lose all of her intestines. And we are just holding on as long as we can to get over to Great Ormond Street Hospital to have this surgery under this specialist Surgeon.

Our hope is that if this specialist surgeon can help fix the issues with our little girls stoma then she won't have to be on TPN for life and she will be able to do normal things again like go to school and play at friends houses and jump in her trampoline and just play as other little girls can without the constant fear that she's going to end up in a life-threatening situation.

Poppy Lou is an amazing, vibrant, chatty, crazy funny, character and a beautiful little soul who does not deserve this to be her story. She has gone through so much in her tiny life so far and while she's the strongest person I know, she shouldn't have to be. She deserves to be able to move on from the trauma she has been through and find answers that could solve the damage that she has endured. She deserves the quality of life she was initially promised and this is why we are raising these vital funds. The costs associated with this type of medical journey are crippling especially when you don't know how long it will continue.

We are now awaiting the call for her surgery from Great Ormond Street and need to keep her well enough in the mean time to be able to get her there, in order to find the answers and a solution for our little girl.

Thank you so much for supporting our mission to get Poppy the expert care she needs and deserves and thank you so much for supporting us throughout this whole journey.

We are eternally grateful to each and everyone of you who have bought bracelets, sent donations, well wishes, shared our story, shared your own posts, talked about this with friends, organised fundraising events or even said prayers. Everything helps and we are so Thankful to have such an amazing community of support behind us.

Lots of Love, Mammy, Daddy, Jacob, Poppy Lou and of course her bestie Chilli the dog. From our Family to yours THANK YOU!

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