Aubree Grace Strong

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Aubree Grace Strong

Aubree's journey with OEIS/Cloacal Exstrophy Aubree was born with Cloacal Exstrophy (also called OEIS).

She is seen at Boston Children's Hospital through the Colorectal and Pelvic Malformation Center.

“OEIS, one of the most severe congenital anomalies compatible with life, occurs in up to 1 in 200,000 to 400,000 live births. The condition affects nearly every major organ system with severe neurologic, skeletal, gastrointestinal, and genitourinary ramifications. Cloacal exstrophy, also known as OEIS Syndrome, occurs when a portion of the large intestine lies outside of the body, and on either side of it —and connected to it — are the two halves of the bladder.”

“In cloacal exstrophy, a baby’s bladder is open in the front and the inner surface is exposed on the lower surface of the abdominal wall. The exposed bladder appears as a right and left half, with the large intestine exposed and connected in the middle. This abnormal connection of the intestine and the bladder allows mixing of stool and urine. Cloacal exstrophy can occur as part of OEIS syndrome, which includes an omphalocele, extrophy, imperforate anus and spinal defects.”

Omphalocele
The omphalocele may be a large protrusion outside the cavity of the abdomen, involving several organs including the spleen, liver and intestine. It may also be small where only a portion of the intestine protrudes from the abdominal cavity. Exstrophy of the bladder and rectum
Development of the bladder In utero is separated into two halves and open. The colon and rectum are also open with a segment of the rectum situated between the halves of the bladder and located on the surface of the abdomen. Imperforate anus
A congenital birth defect, the anus of a new born has not been formed at birth (perforated) and the colon may connect to the urethra, bladder or vagina through a fistula (small tract). Spinal defects
Infants with cloacal exstrophy often are born with further spinal complications including spina bifida.

26/08/2026

Hard to believe this was 3 years ago already! She was such a trooper during that stay and the results of that surgery have been life changing!!

06/08/2026

2nd grade…. Here she comes!! 🥹🥰

26/06/2026

SC here we come! A fast-paced but fun visit to our home away from home! 💛💙

Aubree’s urodynamics scan showed a significant increase in her kidney reflux. She is now a grade 4 out of 5. Her ureter is dilated. She also had a lot of bladder spasms during the test as they were filling her, which we haven’t been having issues with. Her urine culture also grew bacteria so they are treating her for that infection. The team decided to try her on a bladder medication to see if that helps with the kidney reflux. If the medicine doesn’t work, it will likely mean surgery. They are meeting to discuss timeframe of when they want to see us back but I’m assuming it will be sooner than a year.

Her liver enzymes have been elevated for about 2 years with no real reason why so while we were here, they added on a fibroscan to check for fatty liver disease. As more of her labs came back showing low numbers still, they added on a 24 hour urine copper study. We should know the results of that soon I think and then I’m guessing from there will determine next steps.

Overall, even with the kidney reflux, clinically and functionally she’s doing amazing and everyone is still really pleased with her progress and we’re so happy to see how much she’s grown. ❤️

25/06/2026

Another busy day yesterday! Started the day with so much fun at the Children’s Museum with Hope for Hailey!! The girls are inseparable and so stinking cute together!! They had so much fun!🩷🩷

Then we headed to the hospital for her urodynamics study which is always a tough one for Aubree but she was such a champ and did so good! We didn’t get great news from that study but we see her urology team today where we will learn more about next steps.

We also saw hepatology Tuesday (liver) and her levels are still elevated so they ordered a 24 hour urine test while we are here to explore further what’s going on and what any next steps are for that too.

24/06/2026

🥰🥰🥰 couldn’t have said it better myself!

Address

18 Airport Rd

02128

Website

https://www.childrenshospital.org/conditions/cloacal-exstrophy

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