If you were to meet my son Ruben now, you couldn't tell the nightmare that he had to go through at the extremely tender age of 5 days old. Ruben was born full term, and "perfectly healthy." Ruben came home with me at 2 days old, but the joy he brought us wouldn't last long.

He came home on a Friday, and Saturday night I was in the emergency room, because he refused to eat anything. I was told that he was being "fussy" and that it was no big deal. All they did for him was re-hydrate him as he was a little dehydrated. I was told to take him to his pediatrician Monday morning, to check his bilirubin levels which were quite high.

On Sunday, he had his bottles, so I thought I'd wait one more day and take him to the pediatrician. When I woke up the following day, Ruben had thrown up a bright green substance, that had also come out of his nose as well. I cleaned him up, and took him to the pediatrician. When we got there, the doctor went to examine him, and when she opened his diaper to check his belly, there was blood in his stool. The doctor proceeded to inform me that Ruben would be admitted to the NICU, and that he might need surgery. She then escorted us to the emergency room, so that they can admit Ruben.

Once there, the doctor had an x-ray taken of my baby's tummy, and discovered a perforation on his intestine. I can honestly tell you that it was just like what you see on ER There were a few doctors and nurses trying to find a vein to place an I.V., since he needed antibiotics right away. Since he was, again a little dehydrated, they had a hard time finding a vein, and finally settled on the jugular vein located behind his right ear.

Once in the NICU, the doctors performed an upper GI series, here they discovered that there was some sort of obstruction. A surgeon came up to me and told me that Ruben needed emergency surgery to repair the blockage.

After about 3 or 4 hours of surgery, the surgeon whom performed the surgery on my little baby came to us with the news. He told us that it didn't look good for Ruben since he was septic, and that he had very little small intestine left. We were give a 50/50 chance of survival.

When I went in to see Ruben, he was on a ventilator, had 4 IV's hooked up to him, a large incision just above his belly button, and a colostomy. I was told that, if Ruben made it, his only chance for a somewhat normal life would be with him receiving an intestinal transplant, at some point.

As I left the room so that the doctors can work on him, the head night nurse asks me if I wanted a priest to come in to see Ruben. I asked if I could have him christened, and off went the nurse to get the priest and I tried to locate my sister and Ruben's oldest brother as his godparents.

Everybody gave up hope on him but me. I just felt that Ruben was a fighter, and during the christening, he made believers out of everyone. When the priest poured the holy water on his head, he threw his arms up in the air with such force, that the nearly knock the ventilator right out. Ruben proved to everyone that he is just as stubborn as his parents, in a very short period of time. Within a month, the doctors were able to reattach his intestine, and eliminating the colostomy.

He came home at almost 6 months, on home TPN and N. G. tube feeds. He bilirubin was so his at one point, that the whites of his eyes were almost green. He had to be admitted to the hospital on 4 different occasions, twice for c-diff, once for the para flu, and once for a minor line infection. Ruben was cycled on and off different antibiotics, until his doctor put him on pro-biotics, which helped him a lot.

The last time that he was admitted, he was 8 months old, and was able to spend his first Christmas at home. My "Little Miracle" as may refer to Ruben is now 14 months old. He has been off of TPN for two weeks now and eating everything in sight. He is doing everything that the typical 1 year old would do. The doctors have went as far as telling me that Ruben may not need an intestinal transplant after all. I wanted to share Ruben's story, because we thought that we were the only ones going through this situation. I started asking lots of questions and looking for the best specialist to treat Ruben's condition, and I was blessed to have one of the few hospitals that does intestinal transplants right here in New York City.

I have seen a good number of people whom are treated by these wonderful doctors, and see that for the most part, the kids can live a somewhat normal life. I have also seen some of the recipients of Intestinal transplants, and I can honestly tell you that the thought of a transplant and the possible risks involved is now an option that no longer scares me.

Your web page was one of the first I came across. It help me open my eyes to the realities of Short Bowel Syndrome, since my baby can't talk just yet, and you were a voice of someone who is living with this condition. Thank you so much for giving me the hope that, although my baby will go through a lot, there is hope for him of living a full life. The thought of almost loosing Ruben at 5 days old was such a life changing experience, that I still get choked up at the thought of missing out on the joy of seeing him grow and blossom before my eyes as each day goes by.

Sincerely,

Rosa