The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Thursday, February 7, 2013

Gut Check/Biopsy

It was a tough day for Alice as she was required to go through both a Esophagogastroduodenoscopy and Colonoscopy. (a biopsy both her gut and lower intestine)  At first we had anticipated to do the procedure on Friday, but the G.I. doctors found a way to fit her in today. I was grateful for it because it meant she did not have to go so long without liquids if she got in today. There was some discussion between the bone marrow team and the G.I. doctors as to where and how far into the lower gut to take a biopsy. The G.I. doctors were concerned that if they went into too far, the risk of tearing the inside of the intestinal wall increased and therefore did not want to take the chance of doing so. Instead they desired to take the biopsy from the colon. The disagreement came from the bone marrow team as they needed to see further into her gut to gain a better assessment to what is going on inside Alice. After much thought and consideration of both sides I sided with the  bone marrow team and requested that the G.I. doctors to extract the biopsy from further in. They were very compliant to my wishes but again reiterated their concerns and explained the risks. I too was reluctant to put Alice in such a situation, but felt we needed to get answers now. The procedure went well however during the operation one of her broviac lines split and required an emergency fix. In addition a nasal tube was inserted to drain the excess air from her bowels. Upon awaking she was very uncomfortable with the tube. I felt so bad for her. She cried and cried to have me take the tube out.

 The G.I doctors reported that her intestine and colon had the appearance of being sore and swollen, and at eyeball glance was consistent with usual GVH patient. We will wait for pathology for the final results, but are expecting them to come back with a GVH result.



  1. I come to visit your blog every once in a while. I am touched by all that Alice is going through. I send prayers for her healing and for your continued strength. You are wonderful parents.

  2. You ARE wonderful parents. So sorry you have to go through all of this, and sweet Alice. We will be praying for you.

  3. Poor sweet babe. You all constantly show such strength & determination. Blessings for everyone.