Help Baby Neveah fund her repeat pull through surgery

My daughter Nevaeh was diagnosed at birth with Hirschsprung disease and as a result had a colostomy in situ 8 days later. She spent at least 2 months in the neonatal Intensive care at the OKEU Hospital and was relatively in good health until she turned 9 months. At which point, she began to have repeated hospital admissions for Enterocolitis. After battling with Enterocolitis for approximately 5 months her condition worsened and thus required immediate and repeated medical interventions because she was unable to pass stool. We travelled to St Vincent for one month, where she had another two surgeries. This time she was given an ileostomy. Two months later, she needed further medical intervention because the ileostomy prolapsed. We travelled to Martinique where she endured more surgical procedures and had her ileostomy reversed and her entire large intestine removed. We stayed in Martinique for approximately 6 months. We returned to St Lucia in August and she was fine for one month. In October, 2022 we returned to Martinique for Botox injections in her anal sphincter as she had stopped using her bowels again. We returned to St Lucía in November. However, on the 30th of December she fell terribly ill and was rushed to OKEU where she was initially diagnosed with a bowel obstruction.

We contacted the hospital in Martinique where she underwent her last surgeries and was informed that she needed to be admitted immediately. The very next day we travelled to Martinique where she was diagnosed with sepsis from a perforation in her small intestine. She had a few surgical procedures and now has an ileostomy in situ.

As a result of her medical diagnosis and with lots of hope, I am creating this new fundraising campaign to seek financial support from you. I would be thankful if you would contribute to my daughter's surgery and help me give her a better life with less pain and suffering. She is due to undergo another surgical procedure to remove her ileostomy in May 2023. Please share and donate to this worthy cause.

Medical report

Your patient Neveah SIDNEY, born on 12/17/20, was hospitalized in the pediatric surgery department.

Mode of admission: Emergency

Reason for hospitalization: Occlusive syndrome with biological sepsis.

BACKGROUND:

MEDICAL:

- Total colonic Hirschsprung's disease

- Convulsive crisis in October 2021 on hyponatremia in the context of enter colitis

SURGICAL:

- Left colostomy 12/31/20 (in Saint Lucia)

- Ileostomy and staggered colonic biopsies 01/13/22 (in Saint Vincent)

- Ostomy repair + appendectomy on 05/16/22

- Total colectomy and ileo-anal anastomosis on 06/14/22 complicated by bacterial translocation with Enterobacter cloacae

- Injection of perianal Botox on 04/10/22 following a period of sub-occlusion with very liquid stools obtained by resuming nursing.

HISTORY OF THE DISEASE

- Return to Saint Lucia with resumption of supply and correct transit in October 2022

- For approximately 1 week, digestive deterioration with appearance of significant abdominal meteorism, absence of gas or spontaneous stool and deterioration of general condition.

- Emergency return to Martinique on 12/31/22, major inflammatory syndrome, significant abdominal distension with liquid stasis stools during nursing.

- Indication for examination under AG +/- Botox in the event of suspected sphincter hypertonia.

CLINICAL EXAMINATION at entry:

- Bloated but supple abdomen, enter colitis picture, afebrile, no hemodynamic disorder

- Entry weight: 11 kg

- Biological assessment at entry: CRP 495, GB 24, Hb 10.6, albumin 28.8, pre albumin 0.05, Na 131, K 3

Clinical EVOLUTION:

Hospitalization in continuous care from 31/12/22 to 03/01/23 for management of the occlusive syndrome:

Start of antibiotic therapy on 12/31/22, placement of central Midline catheter, regression of abdominal symptoms following nursing, no spontaneous transit, resumption of food on 01/02/23.

BLOCK: ANAL DILATATION + NURSING + RECTAL OPACIFICATION + ANAL BOTOX INJECTION on 03/01/23 (cf CRO)

-Doctor FRANCOIS-CORIDON (Surgeon)

-Doctor BARBOTIN (Anesthesiologist).

From 03/01/23 to 16/01/23 in pediatric surgery:

Presence of a fever at 38°C since 02/01/23, first fever peak at 39.2°C on 04/01/23. Persistent fever until 01/13/23 requiring regular reassessment of antibiotic therapy and control of abdominal imaging

Spontaneous bowel movements several times a day

Midline catheter non-functional on 01/09/23, new central catheter placement on 01/10/23.

Hyperkalaemia at 7.4 mmol/L on 10/01/23 with an ECG showing sharp T waves, treated with kayexalate 10g 1 dose and glucose G5% + 4g of NaCl/L 40cc/h from 10/01/23 noon to 01/16/23 morning included

Weight on 01/13/23: 11.610 kg

Faced with the persistence of fever under antibiotic therapy, the lack of contribution from imaging, the major inflammatory syndrome persisting despite 15 days of antibiotic therapy (capillary CRP 153 mg/L on 04/01/23 and 95.9 mg/L on 01/16/23 with GB 15.49 G/L on 01/10/23 and 21.14 G/L on 01/16/23), and the absence of other septic call points, a decision to Surgical loading is decided in search of an abdominal infectious call point.

BLOCK: RECTAL BIOPSY + EXPLORATORY LAPAROTOMY + EXPLORATORY LAPAROTOMY + ILEOSTOMY on 01/16/23 (cf CRO)

-Doctor CORIDON (Surgeon)

-Doctor FERGE (Anesthesiologist).

Approach by laparotomy after failure of laparoscopic exploration, finding a complex adhesion system, adhesiolysis including adhesion in FID responsible for the plication of the hail observed in imaging. Return to ileostomy.

Placement of a nasogastric tube in aspiration.

Hospitalization in continuous care from 01/16/23 to 01/23/23 for postoperative ileostomy care

Culture of Clostridium Difficile positive on 01/19/23: Contact isolation from 01/19/23 to 01/30/23.

Hospitalization in pediatric surgery from 01/23/23 to 01/06/23 in:

Gradual resumption of feeding in a digestive-sparing diet with diversifaint very slowly depending on the flow of stool in the stoma. Ablation of the central catheter on 06/02/23

ADDITIONAL EXAMINATIONS during hospitalization:

In terms of imaging:

Abdominal echo on 12/31/23: Aspect suggestive of a hypogastric mesenteric volvulus. No intraperitoneal fluid effusion. Aspect of mesenteric adenolymphitis.

Abdominal CT scan on 12/31/23: Acute occlusive syndrome: presence of several dilated digestive loops with liquid stasis and fluid levels. Distal digestive tract (small) anastomosed at the anorectal junction: flat. Collectible image in the sacral concavity: rectum left in place? Or real collection. Diffuse signs of intestinal distress and pneumoperitoneum of low to moderate abundance, predominant in supra-mesocolic.

Abdominal echo on 05/01/23. Moderately thickened appearance of the pelvic small loops associated with infiltration of peripheral fat. The collection described in CT at the level of the present rectal lodgeand mixed contents (hydro-aeric) and appears chronic, probably in connection with the digestive tract.

ETT on 01/11/23 for endocarditis assessment: normal heart anatomy and function except grade 1 mitral leak on valve with normal anatomy.

Bacteriologically:

- Positive influenza A PCR on 08/01/23

-Intraperitoneal pus sample on 01/16/23: many neutrophils and negative culture

- Blood cultures on 04/14/23, 05/01/23, 10/01/23, 18/01/23: Negative

- Blood culture on 12/31/22: Staphylococcus epidermidis

- Blood culture on 07/01/23: probable contamination with Staphylococcus epidermidis

- Blood culture on 04/02/23: Staphylococcus epidermidis

- Coproculture on 31/12/22, 16/01/23, 17/01/23, 04/02/23: negative

- Culture of Clostridium Difficile on 01/19/23: positive.

From an anatomopathological point of view:

"Rectal" biopsy (of the neorectum) on 01/16/23: Histological appearance of non-active chronic proctitis without specific histological signs. Presence of many ganglion cells in the submucosa.

TREATMENTS during hospitalization:

Antibiotic therapy:

- Rocéphine 600 mg once a day from 31/12/22 to 05/01/23 morning inclusive

- Flagyl 100 mg 3/d from 31/12/22 to 05/01/23 morning inclusive then 75 mg from 19/01/23 to 31/01/23 morning inclusive

- Gentamicin 55 mg 1/d from 05/01/23 to 06/01/23

- Tazocillin 1.1g 3/d from 05/01/23 noon to 16/01/23 then 1g 3/d from 16/01/23 to 25/01/23 evening inclusive

- Bactrim 2.2 mL 1 dose on 05/01/23 morning

Relay by Augmentin per os on 09/01/23 because catheter not functional

- Vancomycin 110 mg 4 times a day from 01/10/23 to 01/16/23 morning inclusive

Labile blood products:

Transfusion of 1 CGR on 01/16/23 on postoperative anemia at 6.4 g/dL

Ferrostrane syrup 3.5 mL/day on 14 and 15/01/23

Nutrition :

- Isopedia 22 mL/h from 04/01/23 to 05/01/23 then 20 mL/h from 05/01/23 to 06/01/23 then 10 mL/h from 06/01/23 to 07/01 /23

- Periolimel 20 cc/h from 06/01/23 to 07/01/23 then 30 cc/h from 07/01/23 to 09/01/23

Then 10 cc/h from 01/24/23 to 01/26/23 then 20 cc/h from 01/26/23 to 01/27/23 then decrease until 02/03/23 and stop on 02/03 /23 at noon with regular blood sugar monitoring

Normal diet from 09/01/23 to 16/01/23

Fasting on 01/16/23 and 01/17/23, then food resumed on 01/18/23 at the breast then solid from 01/19/23 with parenteral nutrition by Periolimel

Lipid-free ileostomy diet D1 from 01/26 to 01/29/23 then D2 from 01/29/23 to 01/30/23 then D3 from 01/30/23

Compensation for losses from the stoma when stoma >165mL / 6h by ringer lactate and discontinuation of glucidion from 01/19/23 to 01/29/23

DISCHARGEon 06/02/23 at home with:

Discharge weight: 11 kg

- Day 3 ileostomy diet

- Salt 1 sachet of 6g/day

- Instructions given to parents: presentation to the emergency room if fever, bloating, occlusive syndrome, pain, increased stoma flow.

Quantification of stoma output by the mother (sheet provided)

Nevaeh will be reviewed in consultation on 02/16/23 by Dr TOLG with blood and urine check-ups then once a week for clinical and weight monitoring.

CONCLUSION OF HOSPITALIZATION:

Primary diagnosis: Enterocolitis due to total colonic Hircshsprung's disease

Associated diagnosis(es): Subocclusion on sphincter hypertonia and significant biological inflammatory syndrome without infectious focus found, complex intra-abdominal adhesions

Treatment: ileostomy

Results pending: No.