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    Posted February 28, 2014 by
    Oxford, Massachusetts
    This iReport is part of an assignment:
    Living with a rare disease?

    I am 1 in 5,000 born with Hirschsprung Disease


    Abbie was born on September 23, 2008 three weeks premature by C-section because I had gestational diabetes and preeclampsia. She was born at St. Vincent’s Hospital in Worcester Massachusetts and with in 24 hours transferred to UMASS Memorial NICU because, when she started to feed after birth she throw up a green liquid called bile and her abdomen became distended.
    I am a carrier of Cystic Fibrosis which also can make this happen. They did a barium enema x-ray to see if she had any blockages or twists in her intestines that came back fine. Also did many other x-rays and tests that all came back fine. After a month in the NICU with no diagnoses of what was wrong with her they decided to do a Biopsy where the doctor removes and looks at a tiny piece of the intestine under a microscope. If the nerve cells called ganglion cells are missing, Hirschsprung Disease is the problem.

    On October 22, 2008 she went into surgery to see how far in her intestines that the nerve cells called ganglion cells were missing. She did not have any in her large intestine until the Ileum, so she had an Ileostomy.


    On November 28, 2008 she finally was well enough to come home. She was well and grew well until She had her pull-through surgery on November 12, 2009; she lost her whole large intestine. While performing the Pull-through surgery her left ureter was accidently cut requiring a ureteral stent to be put in until it healed in 6-8 weeks. She was in the hospital from November 12th until November 25th, 2009. During that time they put in a BROVIACcatheter so that she could receive Total parenteral nutrition (TPN). She had 3 infections from the BROVIACcatheter.


    She went into the ER and was admitted to hospital for an infection in her BROVIACcatheter on December 19, 2009, she had a Febrile Seizure because of the infection. On December 22, 2009 while in the hospital already she went in to the OR to have her ureteral stent removed and BROVIACcatheter replaced because of the infection. She was released from the hospital on December 23, 2009 just in time for Christmas.

    On January 1, 2010 she went to the ER and was admitted back into the hospital with another infection in her BROVIACcatheter, she was treated with antibiotics so that it could still be used. She was released on January 7, 2010.


    On January 13, 2010 she went back into the hospital for the finish of her pull-through surgery, reconnection of the intestine she had left to her anus. She was release on January 16, 2010.

    On January 23, 2010 she went into the ER because she was having the same symptoms as the last time she had an infection in her BROVIACcatheter. They drew blood and assured us that they would watch to see if the cultures grew something and sent us home. The next night on January 24, 2010 she had the same symptoms as the night before so we headed back to the ER and this time she was admitted back into the hospital because the cultures grew.


    On January 25, 2010 they took out her BROVIACcatheter because the infections keep on happening. She was in the hospital from January 24, 2010 until February 12, 2010. They finally decided to put in a feeding tube on February 10, 2010 so that she can get the proper nutrients to make up for what is lost because of her having a shortened intestine which does not allow the bloodstream enough time to absorb nutrients from food before it is pushed out of the body as stool.


    On February 16, 2010 her feeding tube accidently was pulled so we brought her into clinic to see if they could put it back in. When they attempted to take the water out of the balloon, they found blood in the balloon. They decided to take her back to the OR to look at the placement to the feeding tube and make sure she was not bleeding from anywhere. They took out the feeding tube she had and fit her for a Mic-Key Button. She was released from the hospital on February 18, 2010.


    March 19, 2010 she was brought to the ER because she had been vomiting since Wednesday Night and was dehydrated. They admitted her so that they could continue fluid and also work on her growing. They have changed her feeding tube formula and she has gained a few OZ. New feeding tube formula made her output high so they returned to Peptimum JR with Fiber. Abbie was release home in good condition on March 26, 2010.


    May 24, 2010 she was brought to the ER because her Mic-Key Button balloon popped and came out the whole started to close and I was unable to replace it at home. She was released within a couple of hours.


    December 11, 2013 She went in to the OR for a Mic-Key Button resizing and an endoscopy. They changed the Mic-Key button to a longer one and everything looked fine with the endoscopy. Came home the same day and they did not have to interbate her which was awesome.


    She has not been in the hospital overnight since 2010 which is a great thing. She still has a feeding tube of which we use at night for feeding. I am not sure if anyone else around here has this and would like to spread awareness to the community.

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