From Healthy to Critical – NEC Battle

I remember like it was yesterday. My birthday was coming up and my coworkers took me out to lunch for an early celebration. I really wasn’t in the mood to go but my husband told me it might be a good idea to get a break from the hospital for a few hours and hangout with friends. Besides, just the day prior we were told by one of the doctors how amazed they were at Jedidiah’s progress. He was almost 28 weeks gestation now and “was one of the healthiest babies in the NICU.” We’ll, that’s what the doctors said at that moment.

For a second I guess that brought us some rest. But we quickly forgot how we were told that the NICU is a rollercoaster with crazy ups and downs. You take 2 steps forward and 1 step back. But nothing prepared us for the battle ahead. It wasn’t 2 steps forward and 1 back. We were about to go 10 steps back and get a little too close to losing our son.

“Jedidiah (or baby Diaz as they called him) had some abnormal results in his bloodwork and we need to run more tests”. This was the phone call I received in the middle of the restaurant. They asked for permission to do a spinal tap, collect a urine sample and told me he would be getting some x-rays done. My heart sank but I had to control my emotions as it was just not the place to lose my mind and I also didn’t really know the extent of the situation.

I got in my car, called my husband and drove to the hospital, slightly frantic. What was going on? In a nutshell, that afternoon we were told the words I feared hearing ever since I went into pre-term labor. “Your son has NEC”.

NEC stands for Necrotizing Enterocolitis. To simply quote what it is: “A devastating disease that affects mostly the intestine of premature infants. The wall of the intestine is invaded by bacteria, which cause local infection and inflammation that can ultimately destroy the wall of the bowel (intestine). Such bowel wall destruction can lead to perforation of the intestine and spillage of stool into the infant’s abdomen, which can result in an overwhelming infection and death.”

NEC is one of the leading causes of death in premature babies. It’s just something you pray you don’t have to deal with when you start getting educated on premature babies and the risks they face. It has different stages from 1-3, 1 being diagnosis and a less severe case and 3 being the advanced disease. About 30% of babies who get it unfortunately do not make it. A lot of the ones who do make it end up having surgery to remove parts of their intestines. And now our son had it, stage 2.

Jed the day he was diagnosed, distended belly.

NEC ultimately caused Jed a massive amount of issues. For starters, he had to be taken off his c-pap and instead get intubated to alleviate pressure on his abdomen. This caused his lungs to collapse on numerous occasions and his chronic lung disease to become more problematic. He ended up staying intubated for over a month because of this. NEC also caused Jed’s blood pressure to plummet to dangerously low levels, so low they told us it was a miracle he was even moving and not going septic. It also caused him to not be able to drink milk for over 20 days while his stomach recovered. Since he couldn’t have milk, he was relying 100% on TPN (Total Parenteral Nutrition aka electrolytes, vitamins, etc.) for nutrition. This not only delayed his weight gain but also caused his liver to start having issues as can happen when you rely on TPN for too long. On top of the 5 antibiotics and other medications he was on, we now had to add one for his liver to the mix as he was starting to get cholestasis.

In addition, all of the antibiotics Jed was on caused bone marrow suppression and Jed’s blood count, more specifically his platelet count would just not go up. He needed over 20 transfusions while in the NICU, roughly 14 for red blood cells and 6 for platelets alone. The platelet issue started after he got sick and we had to deal with it even months after being discharged by visiting a hematologist for close monitoring and frequent blood work. Why are platelets so important? Well, with counts as low as Jed’s were, he could have spontaneous hemorrhaging in his brain and other places. A minor cut could turn deadly as platelets are what help your blood clot and without platelets, well…you get the idea.

During his toughest battle. More wires and tubes than you can count.

So what causes NEC? Babies with very low birth weights like Jed are severely premature. Their whole digestive system is premature. That’s why getting them to drink milk is done slowly and carefully. They increase their milk intake little by little to ensure their tummies can tolerate it. Giving a 1.5 lb baby milk is not the same process as giving milk to a newborn 8 lb baby. Part of this is to prevent things like NEC where the digestive system simply cannot handle the milk.

I knew that the fact that Jed was drinking my breast milk already put him in a better position to NOT contract NEC. Mothers’ milk is a lot easier on their tummies than formula. We were told this often and I did tons of research confirming the same. Even if I wasn’t able to produce milk, I was prepared to accept donor milk for Jed to help prevent NEC. So what went wrong? How did he develop this disease that almost killed him?

Although some of the NICU doctors will disagree with me, I’m 100% positive Jed’s NEC came from HMF.

HMF stands for Human Milk Fortifier and is basically a calorie/nutrition dense supplement given to premature babies with low birth weights to help them gain weight more rapidly, ensure they are getting enough calories and help with their bones. The problem is that the HMFs used in hospitals, for the most part, are all made with cow milk, which increases risk of NEC because of their digestive system’s prematurity.

I don’t want to sound controversial or call out doctors for poor judgement because that is not the case. Jed had AMAZING doctors in the NICU who always acted swiftly and had his best interest at heart.

Some preemies genuinely tolerate HMF perfectly fine and it does wonders for them and their growth. But A LOT of others do not. In Jed’s case, they tried giving him HMF once at 27 weeks gestation and after a little bit of concern over his stomach distention, it was discontinued. When they retried the HMF while Jed was doing amazing, within 1-2 days, he was again distended and shortly after diagnosed with NEC. This is not a coincidence and something we witnessed with a lot of babies in our same NICU and were even told by nurses that they certainly did see a pattern with HMF and NEC. I also read online a lot to see if this was happening elsewhere and without much effort at all, I quickly found thousands of articles and threads from moms who report their babies got NEC shortly after being given HMF.

Why do I share this? I share this because I only know this now after living through it with Jed. If we are ever faced with another NICU stay, I will put HMF as a strict “NO” on our list for doctors. Could it be beneficial? There is a chance, yes. But that risk is way too great and not at all worth it in my opinion. Not only did our son not benefit from HMF one bit, but his condition went from wonderful to critical in a matter of days and we came a little too close to losing him. Trying to help premature babies gain weight is great, but not when their lives could be at risk.

It is worth noting as well that I did find a company that makes HMF that is human-milk based as opposed to bovine (cow) derived (look up PROLACTA). I tried to get my NICU to consider it along with a few other moms who had heard about it, but we were turned down. I can’t speak to the quality of this product or if it causes any complications or issues because we never used it. But based on my research and experience, it seems like a much better alternative. This post is not sponsored in any way.

Just because something is common practice or recommended by a doctor, it does not mean you have to agree to it. I urge you to always do your own research and educate yourself so that you can be active and involved in the decisions being made for your child. Remember, you are their voice!

Sleeping peacefully today. You would never know what he went through.
27 lbs and completely healthy and happy.

With love,

2 Comments

  1. Amy

    October 1, 2018 at 12:31 am

    God bless, God bless. Your story is a testimony of a true miracle. Nothing but the grace of God. God bless Jed, and God bless the momma & poppa for staying strong and united through it all!

  2. Sarah arredondo

    October 1, 2018 at 12:54 am

    This is so amazing! Can’t even imagine everything you and your family went through. Thank you for sharing ❤️

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