Baby Riley’s Survival Story

January 24th, 2013 by Lindsey Souza

I find it incredibly difficult to write the story of my child’s life, but I will do my best.

At 28 weeks, I had a partial placental abruption, which put me into preterm labor, and was put on bed rest (some at the hospital, some at home). I had gestational diabetes that had roared out of control as well. It was decided that IF I could make it, they would deliver my son at 37 weeks exactly. The labor stopped and I made it to 37 weeks.

On October 1, 2008, my son Riley entered the world by c-section,weighing 6lbs 9oz, and considered full term. He was put in the NICU for transient tachypnea of the newborn (breathing too fast),which was expected to resolve quickly. On October 4, at 4am, his doctor appeared in the doorway to my room and told me I needed to get down to the NICU right away. My husband and I rushed down there, where we were told that Riley had developed NEC and e-coli sepsis and that he would be life flight to Duke University Medical Center shortly. He was now incubated.

Once at Duke, he became extremely critical, so much so that surgeons could not even attempt to operate on him, until October 10. At that point, he had become sick, it was a “operate and he may die, don’t operate and he WILL die” situation. During this surgery, he was given a j-juenostomy , for the next 6 weeks. The surgeon said his entire small and large intestine looked sick and he didn’t want to risk removing some that may possibly heal. He was on total tpn/lipids for this time. He contracted sepsis again during this waiting period and was critical off and on.

His next surgery, in November of 2008, reconnected his j-juenostomy,and left him with an ileostomy, and the loss of a great deal of his small intestine and his entire right colon, including his appendix and ileocecal valve. It was decided to let him feed and grow (and hopefully go home) with this ileostomy and operate again when he was bigger/healthier. Two weeks after this surgery, his belly blew up like a balloon and eventually erupted out of his incision line…he had developed a fistula, and all we could do was wait and hope he could ride out the resulting infection. He did and finally, on January 15, 2009, after 107 days, he went home with us.

We returned to Duke in September 2009 to reconnect his ileostomy. The surgeon could find no evidence of the fistula ! He reconnected him, and things looked great. The day we were scheduled to go home, the surgeon decided to do a CT scan on his belly, just to be precautious, as my son had run a low grade fever since his surgery 2 weeks prior. The CT scan showed that the connection made to reconnect his ileostomy had leaked, and he was pouring a small amount of stool into his abdominal cavity. Off they took him to an emergency surgery, where he ended up with an ileostomy again.

In February of 2010, we returned AGAIN to Duke, to attempt ileostomy reconnection. His surgery was on February 10, and he was discharged HOME on February 14 fully reconnected.

We almost lost him so many times and he was so sick, and didn’t fit the “typical” NEC baby case scenario since he was born full term, and being full term with NEC is actually a worse case scenario. But now, he is now a healthy, happy 4 year old with a very scarred up belly. He is medically considered short-gut, but has very few intolerances, most of them being sweets. Because of the loss of the entire right colon, he rides a fine line between diarrhea and constipation, and takes miralax powder daily to regulate him. He started playing T-ball this past fall, and if you didn’t know him and his history, you would never guess he had such a rough go at life his first 15 months!

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7 responses to “Baby Riley’s Survival Story”

  1. Mustafa Hussain says:

    Hi Mrs. Souza , My Name is Mustafa Hussain. I posted about a couple of weeks ago of my current life. I am 21 years old. I was born at the end of October in 1991. According to my medical reports/ parents I was 2 months -premature. Therefore, I did have NEC surgery. I am now 21 years old ^_^ and I am a senior at UC Davis.

    First, thanks for sharing your story with us. It was quite interesting [ I am currently taking an anatomy class, and thus anything disease or human body related sounds interesting right now ].

    I am here mostly for curiosity, seeing as I have never met nor read about someone else’s story of NEC. I only recently learned my disease was called NEC 2 years ago when I asked my old pediatrician.

    Just wanted to comment on some similarities. I too have a scarred belly 😀 .. its about 10-12 inches across my stomach an inch above my belly-button, very visible .

    Don’t think its gonna go away. I also have other scars such as on my left wrist visible on my skin where you would check one’s wrist-pulse .

    I personally LOVE my scars, they look sooo cool… and since I grew up with the post-surgical side effects of NEC, its a part of me. I feel if I got plastic surgery, or lost those scars to some healing mech.. I would be devastated. It is how ” i was born” and what constructs my true identity :D.

    I am not sure if I am considered medically short-guted. They only removed small portions from my small intestine, then reconnected the healthy parts, and reconnected it to the rest of the digestive system.

    Growing up, going to the bathroom for #2 was the worst… accidents and at least 5x a day from [after surgery] up to middle school….

    Now I have full control [ since like 7th grade] but I still go 2-3x a day on a regular basis.

    As for your LAST sentence.. totally agree… even my best friend had no idea until I showed my stomach in 8th grade …

    My final words: I bet my scar looks cooler than your son’s ( 😛 Jk jk 😀 } AND for me, the best part about NEC — I probably do not digest fat very well… I am a whopping 107 pounds, age 21 5 feet 6 inches 😀

    Well hope your son has a wonderful life, Thank God he survived ^^

    Forgive me if I said anything rude.

    Sincerely,

    Mustafa Hussain

  2. Meghan says:

    Little Riley is truly a miracle. Lindsey I admire you for the strength you have.

  3. Amelia says:

    Hi, thanks for sharing your storey. I gave birth 4 weeks ago to a full term baby boy, 6 lbs 11oz he was actually 5 days over due! 6 hours After he was born he started vomiting green bilious vomits and was rushed to special care nursery. I was told he needed to be transferrred to another hospital for greater care. The next day he was operated on and the doctors advised us he had a illiocelical antresia and he lost a very small part of his ilium and his illiocelical valve. He experienced over the next 9 days severe Illness, infection, loss of blood, platlets, he was on full ventilation, had needles in every limb, he was no urintating or passing stools, and became severely swollen and puffy. Due to his kidneys not working he was transferred to another hospital to undergo heamofiltration. On his arrival at the new hospital the first day was a whirlwind of tests and exams. An ultrasound found a small black pocket of “something” the needed to operate to find out what it is. To the surgeons suprise they found Alexander had developed NEC and lost all of his small intestine except 25 cm and approx 10% of his colon. He already lost part of the illium and illiocelical value in the previous surgery. This length of his small intestine is a boarder line amount for his survival. We are in the process of waiting approx 2-3 years to see if his small intestine will grow anymore to allow him to eat in the future. We are now facing severe issues with his kidneys, they are not working and he has not produced urine for over 4 weeks. They believe this is due to the severe sepsis he experienced as a result of the NEC. So this is where we are at the moment waiting for the kidneys. He is on TPN and 2 ml of breast milk per hour for comfort as it is not being absorbed. He also has an iliostomy and this will be the case until the doctors are happy with his grown length of bowel to perform the re joining surgery.

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