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My child with Hirschsprung's Disease

Posted Oct 16 2009 8:15am 1 Comment

Haidyn and Mommy    I am a 21 year old mother to twin daughters. My husband was born with Hirschsprung's disease. Throughout my pregnancy we informed all the Doctors about it. My pregnancy went without complications and they were born at 38 weeks. They were a healthy 6lbs 7oz and 7lbs 8 oz . 

   Haidyn  had a hard time eating and seemed "swollen" She would grunt when you touched her and I asked the Dr about it numerous times making sure to mention the Hirschsprung's. He said she was fine and did nothing. 

   Just 3 short weeks into her life while changing her diaper  I noticed it had a bloody mucus look to it. So I placed the diaper into a zip lock bag and went strait to the Dr. with her. I again asked about the Hirschsprung  and he brushed it off and told me she had colic. He assured my husband and I that he would take a sample "just in case" but that it was nothing and we were"safe " to take her home. He gave us a sample of some formula to help with colic.  Within the next 3 hours of leaving the doctors she had began to projectile vomit green . I called the Dr immediately and tried to wait for him to call me back. My husband decided to just take her to the E.R.

   The vomiting did not stop and she became lethargic.  They did a simple x-ray and told us that she had a blockage in her intestines. They placed an IV and a feeding tube in threw her nose to help with the vomiting. They said they were going to transfer us to UNC children's hospital.

   When we arrived we were met by a large group of pediatric surgeons. They said it was very likely that she had Hirschsprung's Diseases. They said they were cancelling another surgery and taking her right away. My husband and other daughter were still making the 3 hour drive. So I just signed the papers and let them take her with the thought that we were going to lose her and my Husband will not get to say goodbye.

   My husband showed up about 30 minutes after they took her into surgery. The surgery took about 3 hours and they said it went well. The diagnosed her with Hirschsprung disease enterocolitis, which is an infection or inflammation of the large intestine. They could not find any ganglion cells in the large intestine and finally found them 12 cm up the small intestines.

  We spent a month living in the hospital with her myself Camryn (her twin) and my Husband. She had a broviac placed and during the first surgery they places a GI feeding tube. She was feed on a 24 hr feeding pump for about 5 months. they removed the broviac after about 2months we were lucky enough to never get an infection. Over the next year we were in and out of the hospital.

I wanted to tell her story to help others know about the disease and help anyone I can. She will be having a pull-through surgery soon and I am very nervous about it so if you have been through this I would love to know what to expect.

Comments (1)
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Hello, thank you for sharing your story - you are a very strong and determinded mum - your daughters are lucky to have you!  Can you please tell me how Haidyn is now, following on 3 years later, and after the pull-through operation?  Thank you so much.
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