Update

Friday, October 14 was Chloe's second birthday. Chloe brings so much happiness to our family!! She enjoyed her new toys and hopefully they will keep her busy during the long drive to DC. 1 week until they leave. Thank you all for the love and support. I'll keep you updated on how everything goes.

The Beginning

Chloe is my niece, who was born on October 14, 2020. As the story goes, my sister’s pregnancy was pretty normal. My sister followed the “rules” and did exactly what the doctors said to do. Her and her husband had the genetic testing done and everything was on track. Suzie went in for a scheduled induction on October 12. After 48 hours of no progression, two epidurals failing, and the baby getting stressed from hitting the pelvic bone with her head, Suzie was taken in for an emergency c-section. At this point, it was pretty late at night, so I went to bed since no one was allowed in the hospital because of Covid.

I woke up the following day to no text messages or voicemails saying, “mom and baby are well.” That’s when I knew something had gone wrong. The first words that the nurses told Steve, while Suzie was hemorrhaging, were, “your baby has down syndrome and will never walk.”

Chloe was rushed to U of M Mott’s, with Steve following behind. Unfortunately, Suzie was not allowed to go because she had just had a traumatic c-section. Suzie was able to join Steve at Mott’s a day later, but no one was prepared for what was to come.

First Disease Diagnosis

Chloe was in the NICU for two months. She was in a full-body harness for the first six weeks of her life because her hips and knees were displaced. Chloe kept aspirating, so she had feeding tubes and tubes for aspirating stomach fluid. She had not had a bowel movement yet. The doctors started looking into why Chloe was having these GI issues. By two weeks of age, Chloe had already had two surgeries. One was because she had a malrotation of her intestines and the second was to confirm that she had a rare disease called Hirschsprung's. Hirschsprung's is a disease of the intestines, generally the lower intestine. With Hirschsprung's, the baby's nerve cells were missing from parts of the bowel, making the intestines unable to contract and move food through. Chloe went in for surgery again for an ileostomy bag.

Second Diagnosis

Chloe has also been diagnosed with an EVEN RARER disease called White Sutton Syndrome. WSS is a newly discovered disease that approximately only 100 people have been diagnosed with worldwide. Chloe is 1 of that 100. So there are a lot of unknowns with White Sutton. Still, in general, Chloe will have some amount of delayed motor skills, intellectual disabilities, GI problems (this is where the Hirschsprungs came from), low muscle tone, hearing loss, autism and more.

The Reason for the Fundraiser!

This upcoming surgery that this fundraiser is for will be to reconnect her intestines, remove the bag and see how everything functions. Chloe has other abnormalities with her intestines, so only one doctor has done this surgery with added complications. This doctor is in Washington, DC. Chloe will be in the hospital for two weeks. Suzie and Steve have to pay for a hotel, food, transportation and many other things while they are with her in DC.

More About Chloe

My sister and brother-in-law have done fantastic with all of this. Suzie could not go back to work due to all of the appointments. In Chloe’s first 16 weeks of being home, she had 40 different doctor appointments. Currently, Chloe has four appointments a week and sometimes more. Unfortunately, insurance is only covering some of these appointments. Steve has been working hard to help pay for things Chloe needs. Chloe has PT, OT, speech, early on, ortho, auditory, ophtho, neuro, just to name a few.

Chloe has had multiple sleep studies because she has sleep apnea. In addition, she had swallow studies, tubes in her ear, multiple auditory brainstem response tests (Chloe has hearing aids), EEG for possible seizures, and tongue-tied.

Despite all the ups and downs, Chloe is the HAPPIEST baby I have ever met. She will be turning two next month and then going for surgery. Chloe is crawling all over, which was a big hurdle. She is working on feeding herself and walking. Chloe brings joy to so many people. She has come a long way but still has challenges ahead. Chloe, Suzie and Steve deserve all the help they can get. Thank you for all of your support.