Albert Rigau: Barcelona, Spain
Albert was born the 12th March 2009. Before that day I had been resting in bed because the bag was broken. He was born apparently healthy but six days later they diagnosed him with Enterocolitis and after spending two days with an abdominal zipper they decided to go for surgery. The result: almost all his intestine lost. He was left with his duodenum, 7.5cm of jejunum and last part of his colon. About one month later they were able to do the anastomosis surgery and we spent six month in the NICU learning how to deal with a short gut kid who was going to be home soon with a Broviac line.
When Albert was seven month old we were discharged and sent home with TPN for 22 hours and an NG tube for night feeding. As he started to eat by mouth quite well, they removed NG tube and did not put any other kind of night feeding device. Sometime later TPN was reduced to 19 hours and now we are on 17 hours a day. Soon after getting home Albert’s liver started to suffer and they started scaring talking about transplant and so. As I have been sealing through the net I found out a short gut syndrome support yahoo group and there started my struggle to get Omegaven here.
At first I had to understand everything related to TPN, lipids and liver functions. As soon as I read about some cases I started asking our doctors for these wonderful lipids which really help the liver to heal. It was not that easy because here they know very little about everything related to short gut syndrome and our doctors did not listen to us. They did a biopsy on Albert’s liver and it turned out to be almost cirrhotic. We were really mad at that point and I finally wrote a mail to Dr. Puder in Boston who was really kind to us and helped us to achieve our goal: getting Omegaven for Albert. We finally succeeded in doing so and since then Albert’s liver is getting better little by little.
Albert was not gaining weight in a satisfactory way. So our doctors proposed STEP. As his intestines were dilated he was a perfect candidate for it but we were a bit scared…First time they try we had a bronco aspiration problem because they did not leave him enough hours without eating before surgery and he vomited during intubation. This time they placed an NG tube before surgery to make sure there were no bowel contains and as his duodenum was also really dilated they also empty him right before surgery. The result of the STEP: Before he had 28 cm and now he has 70 cm. The problem: the stapler failed during surgery and they had to reopen him to fix a lost stitch. As a result his wound is not healing really well and they are going to put a VAC today. They are also doing a transit to check all bowels are in the right place and working.
A g-tube was also placed during surgery so as to help reduce TPN with night feeding. Albert is going to be three next March and I would love that he starts school next September but to achieve this target he should be on TPN just for the night so we have a lot of work to do now with him. Here in Barcelona where we live there is not much information or cases of short gut syndrome and doctors seem to be lost most of the time. It is a difficult and hard battle the one we are doing here to help our little Albert.