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Nicole Ventura’s NEC Story: Trust Your Gut

Author
Josef Rappaport, DPT, Physical Therapist
August 3, 2022

Hi. My name is Nicole Ventura from Nicu Mamas Foundation. I’d like to share my NEC story and experience with you to raise awareness and offer to help those in need. Continue reading and you will begin to understand how NEC has affected my life.

Here I am (on the right :)), pregnant at my friend’s wedding
Here I am (on the right :)), pregnant at my friend’s wedding

It all started in November, 2019, when I found out I was pregnant with my baby number three. I had recently moved back to NY from California after finishing college. I needed to find an ob-gyn asap to make sure I had a good birth doctor and care for me and my son (who was in my belly at the time). 

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I had found a doctor and soon after went to my first appointment. During that appointment, the doctor told me I in fact was not pregnant. At that point, my pregnancy would have been 4 weeks along. I told him that it was too early to tell, at which point he told me to come back in two days! Two days? “Whatever”, I responded.

I saw the doctor again two days later. I had some spotting which the doctor said was a molar pregnancy. He insisted I have a D&C procedure (to remove the fetus), so on December 18th, I had one. I remember the doctor yelling at me because I was having a panic attack. I should have just left after that but I didn't because I was more scared of having cancer. 

"I remember the doctor yelling at me because I was having a panic attack."

A few weeks later I began having heavier bleeding, which the same doctor said was menstrual bleeding. However, later that day I started hemorrhaging and demanded the doctor see me again. He agreed to see me, but just did a physical examination, not a sonogram. 

He told me he must have left tissue behind and that he wanted to give me a CT scan and a pill they give women for ectopic pregnancies (when a fertilized egg lives outside the womb). 

At this point, I felt like the doctor messed up, so I decided to go to the emergency room, where I found out I was 13 weeks pregnant. I was still bleeding and had a softball-sized clot.

Then, one night at 24 weeks of pregnancy I went into preterm labor. I spent 3 weeks (April 2020) alone. I was in the hospital with contractions every day, just about all of them between five and ten minutes apart. 

At around 26 weeks I went into full-blown labor and gave birth to my son alone. My newborn son, Robert James, weighed 2 lbs and was 15-inches long and was doing well until he was about twelve days old when he developed NEC (Necrotizing Enterocolitis). I had never heard of NEC nor was I informed about it. I was breastfeeding (pumping) only and didn't want my baby to have baby formula, but I came to him too late and he had to eat, so the hospital gave him formula. 

Robert James in the NICU. October, 2021
Robert James in the NICU. October, 2021

Robert James’ intestines ruptured and caused e-coli and he needed surgery to remove 5cm of his intestine and his appendix. The hospital said he had a 10% chance of survival. It was the worst day of my life. He needed blood transfusions but they couldn't access his tiny veins so he needed another surgery right after the first to place a direct line (broviac) from which he received over 20 blood transfusions. 

A diagram the doctors drew to help me understand my son’s situation
A diagram the doctors drew to help me understand my son’s situation

At this point, Robert James was swollen and on a ventilator. He received round-the-clock treatments of antibiotics, blood, platelets, and everything else. It was so hard to see his lungs collapsing and not knowing if he was going to make it. 

A few weeks later he was doing well and would begin feeding again. At this time he had an ostomy bag that they would later remove closer to his going home time. 

The first time I held my son, Robert James, when he was 28 days old. November, 2021
The first time I held my son, Robert James, when he was 28 days old. November, 2021

After over 3 months in the NICU and a couple more scares,Robert James finally came home on medication for his liver which has resolved around one year later. He's now 18 months old and doing amazing. He’s at a 22-month old’s level and has so far passed all of his milestones! 

We’re so happy to have Robert James home with us and thriving. We take one day at a time and appreciate all our little miracles.

If you'd like to reach out to Nicole, feel free to email her at this address.

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