Baby Harriet's Hirschprungs Disease Surgery

Dear Friends and Family of the Elam’s,

First of all, Chelsey and Jordan want to thank everyone for their congratulations, thoughts, prayers and gifts they have received with the birth of their twins, Huck and Harriet.  As many of you know, Harriet was born with a rare disease called Hirschprungs.  They have kept a lot of the details regarding her illness and procedures out of social media, not for any reason other than it has been a lot to handle. However, Harriet is soon going to Denver to have a few major surgeries that will affect her for the rest of her life, and they could really use our support.

When Harriet was born, she never passed any stool on her own.  They gave her an enema and a small amount of meconium came out, but when they were about to discharge both the twins, Harriet wouldn't eat and Chelsey noticed that something just didn't seem right.  When she was 4 days old she was admitted into the NICU.  Because Hirschprungs Disease is so rare and cannot be diagnosed without a biopsy, the Doctors did not know what was wrong with her.  They took many x rays and could not see any obstructions.  For a week, they would put her on belly rest (not milk) and then try and do very small feeds (1ml-2mls).  She would get up to 10mls and then would get sick again.  Finally, they decided they needed to do a surgical biopsy.  While in the biopsy they dilated her colon, so afterwards she was passing stool on her own, and all the Doctors and nurses seemed to think she was getting better and that the pathology reports would surly be negative.  However 5 days later the pathology reports came back and showed that Harriet had no ganglion cells in her colon.  Ganglion cells are what normal people have that tell the body to stool.  After that it was a whirlwind.  They found out she would need an ileostomy and would have an ostomy bag for the foreseeable future.

Two days later they took baby Harriet into her second surgery at just 2.5 weeks old, and removed the portion of her colon that was missing the ganglion cells and performed her ileostomy, with the promise that when she was older they would perform a pull-through surgery.  

Chelsey dove into learning everything there was to know about the disease and joined multiple HD Facebook groups to learn from other parents.  Their pediatrician connected them with a pediatric G.I. doctor and he confirmed what Chelsey had felt, which was that, for her next surgery, they needed to travel to a hospital with a pediatric Colorectal surgeon since Tulsa does not have one.  She found one of the best in the United States who specializes in Hircshprungs Disease and reached out to the Children's Hospital in Aurora, CO.  

On February 18th, Harriet will have a reverse iliostomy where they will be taking out her ostomy, as well as a pull-through.  Its of the upmost importance that this pull-through is done correctly the first time, which is why they are traveling to this special surgeon.  The pull-through will consist of them removing more of her colon and pulling it through to her anus, where she will hopefully be able to pass stool relatively normally.  She will never be completely normal since she will be missing part of her colon, but the hope is, that after this surgery she can eventually lead a normal life.  The recovery however will be difficult, not only for Harriet, but for Chelsey and Jordan too.

Because their other children are so young, the entire family will be traveling to Denver, along with their beloved Nanny, Pat.  They will need to fly because the babies cannot be in a car for the amount of time it would take to get them there, and after Harriets surgery, she will need her diaper changed often.  They will need to rent a car for the two weeks they will be in the Denver are that is large enough to accommodate the entire family.  Chelsey has been unable to work or run her business since the birth of the twins and funds have been incredibly tight.  They are in need of our support that could help to lift the burden from the copious upcoming travel expenses, including home rental, car rental, food and child care for the other babies while Harriet is in the hospital.  As well as the medical expenses they have accrued and will continue to accrue after her surgery.  Every little bit will truly help this sweet family, and this beautiful baby, that we love so much.