Ellie Brogan has a tee-shirt that states “It Takes Guts to have Short Gut.” This gorgeous little girl and her mother, Abby, definitely have guts!
Tell me a little about yourself and your family.
My name is Abby Brogan. I live just outside of Boston with my husband Gib, daughter Ellie and a wonderful dog named Gus. I take care of Ellie and also have a part time job working for our home healthcare company as an advocate for others on Nutritional support. Gib works for an ocean conservation organization that is based in DC.
Tell me more about Ellie’s disabilities. Did you know when she was born that she had disabilities. If not, how did you feel when you discovered it?
Ellie was born missing 90% of her small bowl and 30% of her large bowel due to Jejunal Atrisia. Early on in her development her bowel twisted as it moved into the abdominal cavity. This bowel died and was re-absorbed. This means when she was born she had 30 cm of small bowel coming down from her stomach that ended in a very dilated dead end. Then what was left of her colon that was coming up from the bottom was very skinny, called a micro colon.
We spent the first 8 months of Ellie’s life in the hospital trying to get her bowels to work. I quit my job, we sold our house and we moved from Connecticut to Massachusetts to be closer to Children’s hospital and our family.
Ellie has an ostomy, a G-tube and a Central IV line (CVL). Ellie is on tube feeds and was on Total Parental Nutrition for the first 2 and half years of her life. The TPN should have damaged her liver beyond repair during those two and a half years but we were lucky enough to get on the new experimental lipid called Omegaven. It is one of the main things we credit for saving her life.
You blog a lot about Ellie’s issues. How did you go about making the decision to blog?
We started the blog as a way to keep family and friends up to date with Ellie’s medical progress. Then it morphed into a way to communicate with other short gut parents and adults. We try to blog about everything that we go through with Ellie. Mainly because we have had so many letters and emails from other short gut parents thank us for sharing. It is also an amazing outlet for us when times are tough. We get a ton of support from the people that read it and some great ideas when we have problems.
How have Ellie’s disabilities affected you as a person and as a mother? What did you do right? What do you wish you had done differently?
I quit my job as the associate curator at Mystic Aquarium in Connecticut and had worked in the Marine biology field for 10 years. I was always that woman who couldn’t contemplate not working after having a baby. Then Ellie was born, our lives were turned upside down.
I am so thankful for Ellie each and everyday. She is beautiful, smart and has a ton of character. I don’t think this affected me much as a mother because she was our first so we didn’t know anything different. We look forward to a second child with only dirty diapers to worry about.
What did I do right? Gave birth to Ellie. What would I have done differently? I wish I had listened to my gut more when she was in the hospital for the first 8 months.
What do you want other parents to know?
Listen yourselves. Laugh when you don’t want to. And demand what you want/need from doctors, nurses, suppliers, education boards, etc…….
Be sure to stop by and say hello to Abby and Ellie at her blog The Short Gut News!
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.