Susan’s Story

O Warrior Stories

Written by: Susan Hantz-West

I was born in October 1950 in Brooklyn, NY. They didn't have any technology in those days so no one knew if anything was wrong until they gave birth. Our doctor, Dr. Benjamin Pollet, explained to my dad that since I was full term and came out screaming, he thought they should give it a shot. I had a 50/50 chance of survival. In the 1940s/50s/60s they rarely tried to save babies with severe birth defects. I had, what they termed, a huge Omphalocele with everything in it.

My dad told him to try; they stabilized me (also was baptized and given last rites; a few family members went to the funeral home to set up the funeral) and at 2 hrs old they pushed everything back in and sewed me up. There was no NICU or PICU in those days; I was in a covered bassinet in the nurse's office. They had a NG tube placed for feeding, but there were no other needles/tubes for babies. I vomited a lot of blood the first few days and I was given a blood transfusion. Dr. Pollet said, when he went in the day after I was born, one of the nurses was coming out of the office and said "she's still here"; he felt that I might actually make it.

I was in the hospital for about 2 months. They pulled the NG tube out and just handed me to my mom who then had trouble getting me to feed. My parents could visit but weren't allowed to touch me. I had a hernia repair at age 2 1/2 years old. The summer before I started kindergarten, my mom asked about muscles. Up until that point I had a truss holding my stomach in. So that summer, they stretched my back muscles to the front and that was my muscle closure. Needless to say, I don't have anything like strong core/back muscles, but that hasn't stopped me.

I was fine until I was 12. From then until I was 28 I had 7 serious bouts of blockages/adhesions which landed me in the hospital/operations. They also found out from GI tests and bariums that my body wasn't breaking down fiber and. In my late 20's they put me on the low residue diet. They also found that I had very slow digestion which affected my eating/weight gain.

Susan with her newborn son, Brian

Life calmed down after that. I got married in 1981. I had my son in 1986 (my Valentine baby).  I saw a high-risk doctor, but all went normally.  My organs are mal rotated, some fused together, my heart is on the right (dextrocardia) and tilted towards my back but is working just fine, my right kidney is small and in a weird place but working (my left kidney is not in its proper place but 'in the ballpark'), I have 80% lung capacity, a duplicate inferior vena cava but still live my life.

The usual growing up, didn't really eat much, always very thin (until I hit menopause - now overweight!!!). I finally met another adult omphalocele warrior the day after my 65th birthday. I was SO excited and have since met several Long Island ‘Moos'. As of now we try to meet for lunch at least once a year.  Dr. Pollet was my doctor until age 10. We then moved to Long Island. 

In my early 20's, when I went to visit some relatives, I stopped at his office and asked his secretary not to give my name, I would introduce myself.  I went into his office and said, "Hi doc, I don't know if you will remember me".  He stopped me mid-sentence and said, "oh Susan, how could I ever forget you!".  I visited him several times after that; that's how I learned most of my medical 'history'; my parents wouldn't talk about it.  I have since found out I have a very mild case of pulmonary hypertension but was told it's not bothering me and just keep doing what I'm doing.  Most of my issues now are more age-related than O related though I still have lots of constipation, but just drink more water and cut back on eating. 

I would like to acknowledge my mother's side of the family and my dad.  In the 1950's, while birth was covered, operations on newborns weren't (you had to be several months old before medical would cover it).  The hospital wouldn't release me until the bill was paid.  No charity or religious entity would help them.  My mom's 8 siblings and her mother handed over what savings they had to pay the bill.  My dad worked 3 jobs for 10 years to pay everyone back.  There were some rough times but we all helped one another and made it through. 

Susan Hantz-West today