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Down Syndrome’s resilience - part two.

Updated: Oct 3, 2023

It takes a special team to show compassion during any medical emergency, the emergency medical team was highly skilled and knowledgeable on how to transport tiny little baby successfully and securely, once Journeigh's medi-vac team was prepared to transport Journeigh and I, we were off to Nemours children's hospital.

Upon arrival to the hospital to the NIC-U. My nerves were calmed by the grace of god, at that exact moment I knew I had to put everything in his hands and pray that all the questions were going to be swiftly answered on what was going on with my 24 hour little baby girl.

After a thorough examination by the NIC-U medical team, the team found that Journeigh's intestines were unable to function properly. What did this mean to me ? It was like they were speaking another language and interpreting this was very hard and difficult. Until, I meet a confident surgeon who's treated intestinal issues of all kind. He reassured me that he's going to make sure everything was going to be ok.

The surgeon wanted to be 200% certain on what could be causing this . Unfortunately, the surgeon stated its impossible to know the direct issue without having go to go into her intestines to get a biopsy first, which Journeigh would need to undergo exploratory intestinal surgery to find the definitive diagnosis.

Once the biopsy procedure was completed, it was like waiting millions of years for the results. It would be 24 hours until the lab results would be released.

Mentally this would be the biggest test of my life, having a baby with a life long condition with another condition on top of that condition.

As I counted down the minutes to getting the results, the surgeon came in and released the biopsy results. The results were positive for Hirschsprungs Disease.

Hirschsprungs Disease is a birth defect in which there are missing nerve cells in the large inststine, so Journeigh was not moving stool and her intestines were blocked. This happens about 1 in 5,000 newborns.

What does this mean....... to be continued.

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United to Empower, Advocate and Support children and families who face daily obstacles with being dually diagnosed with Down Syndrome and Autism that relates to the continual support of additional medical, social, educational, and financial resources .

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