‘He was 6 months old and only 9 pounds. I am a living nightmare. They knew it was all a tremendous f*ck up. They knew he was like this because of them.’

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“I got the call around 3:30 a.m. I spent 9 months preparing for that call. 9 months worth of nights obsessively checking the volume on the phone, making sure it was charged, that it was close by, that I hadn’t somehow missed any calls. Well I got my call. Loud and clear.

My son Dash was born a month and a half early with several health complications. I hope to raise awareness for a condition called HLH, and to also call out the medical industry that continuously fights against parental advocacy and people speaking up. I can only hope that through Dash’s torturous life another person is able to be diagnosed faster, and that more families are listened to when they sense something is wrong. There are 8 criteria for HLH. You can look those up specifically, but Dash consistently had 6, but depending on the week, all 8.

Newborn with HLH being held in hands of nurse with purple gloves on
Courtesy of Jessica Leigh Stanzione

HLH is short for a nearly impossible condition to pronounce… Hemophagocytic Lymphohistiocystosis… yep. And MAS, is slightly easier on the tongue– Macrophage Activation Syndrome. Both HLH and MAS are within a family of ‘histiocytosis’ conditions. They are not cancer, per say, but they behave like cancers, spread like them, and are treated with similar immunotherapies and chemotherapies. There is even a cancer-like condition within the family called Langerhans Cell. HLH can also be related to pre-existing Leukemia. In my son’s case, the ‘good news’ was that he didn’t have leukemia. That was how low the bar had been set for us at that point. HLH and MAS are like over-active immune issues. The body does what it’s supposed to do when a threat comes about, but instead of stopping, it just keeps going, and can no longer tell what the hell it is doing and starts literally eating away, Pac-Man style, at healthy immune cells. It is visible under microscope through biopsies of suspected and targeted organs.

Father holds son with HLH in one arm with other wrapped around his wife on beach
Courtesy of Jessica Leigh Stanzione

Prior to the events of this story, we had already stayed in NICUs for 4 months for some congenital health issues of prematurity that Dash had. His conditions were improving and going away. The only thorn in our side was that in order to leave the NICU, he had to get a g-tube for feeds because they didn’t want to spend what they foresaw as being 3 more months dealing with feeding issues. We reluctantly did the g-tube, and went home. Within 4 weeks I had him drinking bottles, and within 6 weeks of being home the g -tube ripped out. It was always a pain and never healed right. We’d been the ER 3 or 4 times dealing with it and were always sent home with crappy protocols to follow that never worked. We finally got admitted to have them oversee it’s healing, since we didn’t want a new one put in anymore, and… we never went home again.

Dash never went home to his sweet and fulfilling life ever again.

Baby with HLH in emergency room with gold cross necklace around his neck
Courtesy of Jessica Leigh Stanzione

Week after week, Dash sat in a low budget surgery recovery ward, because they were in charge of the g- tube surgery and wound care. The surgery team knew him from NICU, they had done his past surgeries and his procedures. They knew he was complex. They knew to question everything and be weary. He had always been ‘that’ kid. And yet they explained away everything I suggested, every observation and concern. The g-tube was a disaster. After about two weeks of ‘healing’ something they said would take a few days, Dash was swelling up, with fluid. And as I’d been warning for a week, he eventually became completely immobile with distention from ascites, and now had hepatosplenomegaly – an enlarged liver and spleen. Two things I pointed out for days and days as they formed. The trauma from the g-tube wound, and subsequent NG feeding tubes being put in and taken out over and over due to more ridiculous issues, had triggered something in his body – it was majorly freaking out. They finally decided that my very first Mother’s Day morning would be the best time to call me and tell me they were now concerned because he was in full respiratory distress. He was going to PICU for the very reasons I’d been begging them about for weeks. Happy Mother’s Day.

Mother sits in hospital holding baby with HLH who will never return home
Courtesy of Jessica Leigh Stanzione

Once we were in PICU things only got worse. By this point something very critical had happened to Dash’s body, and the warning signs were all there, but had been ignored. So now, here we are in PICU a month too late. The surgery team would come and check on the g-tube hole every few days. They hung their heads and said very little when they came in. They knew it was all a tremendous f*k up. They knew he was like this because of them.

For two more months, Dash stayed sick and almost died several times. The decline was fast, and hard. They’d come in and stare at him, think of something to do with his vent or a pain med maybe. They also essentially starved him to death because they were afraid to put a PICC line in for TPN. His body was freaking out with NG feeds, and he couldn’t take food by mouth because of the g-tube hole in his stomach. He was 6 months old and now only 9 pounds. I am a living nightmare. I show up at 2 a.m., throwing my bag across the room, I am sarcastic and demanding. I make threats. We have weekly meetings. I ask for second opinions. I hysterically cry over his bed. Eventually they admit they were in way over their heads and we were transferred to our third and final hospital for a workup for a possible liver transplant. His liver numbers were never bad enough to warrant a transplant, nevermind even be listed, but it was the only obvious thing wrong to go along with– the distention, the ascites, the high bili… so liver transplant it is. I was just happy to get him the hell out of that butcher shop.

Baby with HLH lays in crib in hospital room
Courtesy of Jessica Leigh Stanzione

So now at our THIRD hospital, it was another full new beginning. I could tell immediately that their PICU team was far more invested in his well-being than the last hospital, but the transplant surgeons wouldn’t even acknowledge him until he was triple the weight he was. So we sat there and ate. In the meantime he got trached, having been intubated and sedated due to the abdominal distention, and was way more interactive. I hung out with him all day. He got therapies and music. But one week, he suddenly displayed fevers…like 103/104 fevers, sustained. At the time, he was actively withdrawing from months of these sedatives and pain medication drips, and having horrible withdrawal episodes. Withdrawals can cause fevers, so that was the justification for that for awhile. But the episodes, the fevers… they were horrible and not stopping. Finally, his transplant GI asked, ‘When are we going to stop blaming these fevers on withdrawals?’ She asked if anyone officially ruled out ‘HLH.’ HL-what?  So he got two bone marrow biopsies, his third liver biopsy, and a spinal tap, all looking into this HLH condition. We all waited for results, while I Googled and realized the end was near.

Baby with HLH lies in hospital with tube up his nose holding onto giraffe stuffed animal
Courtesy of Jessica Leigh Stanzione

A day or two later, HLH was diagnosed. It is within of family of ‘histiocytosis’ disorders. It is a horrible condition with one single mission: destroy. The more I read about it the more I knew it was bad. Like really f*ing bad. And the more I read, the more I knew this is what he’d had this whole time. There are 8 criteria, and you only need 5 to diagnose and justify starting treatment. The treatment is chemotherapy. The cure is a bone marrow transplant. Important to mention is that there are two kinds of HLH. There is a genetic kind with certain genes associated with it (all of which Dash tested as normal), which typically results in rapid death if left untreated. But there is also a secondary HLH that is more ‘triggered,’ rather than genetic. It can trigger in anyone, at any age. You can be 2, 18, or 50 years old and trigger it. This is the kind we think Dash had, and we believe it was the intense trauma of the g-tube site and subsequent infections that triggered it. Had the g-tube site been properly treated and protected from the beginning, none of this would have happened.

HLH prevents the immune system from shutting down when it’s no longer needed. It may be seen on microscopes in biopsies as a ‘Pac-Man’ style feeding frenzy of healthy cells by immune cells. And as if it isn’t horrible enough, HLH can also spread to the brain. In Dash’s case this happened. The ‘withdrawal episodes’ he’d been having were in fact horrible brain activities manifesting into changes of mental status. An EEG was finally done and seizures were recorded. At the time of chemotherapy commencement, Dash’s HLH was absolutely raging, in his liver, his spleen, his bone marrow, and his central nervous system. He received weekly IV chemo, weekly IT chemo for his brain and a spinal tap at the same time to release spinal fluid pressure from his brain.

Baby with HLH lying in hospital bed looking up at mobile above him
Courtesy of Jessica Leigh Stanzione

After 4 weeks of treatment, there was no sign of improvement. It was too late. He didn’t even resemble my little Dash anymore. On September 10, he coded twice around 3 in the morning. I got the call around 3:30 a.m. I spent 9 months preparing for that call. 9 months worth of nights obsessively checking the volume on the phone, making sure it was charged, that it was close by, that I hadn’t somehow missed any calls. Well, after 9 months, I got my call; loud and clear. We got there, and Dash’s vitals were no longer compatible with life. He looked HORRIBLE. That wasn’t my child, my little Dash. That is what a body looks like when the soul has risen. What was left was just a body ravaged by a series of unfathomable medical disasters. His abdomen had completely blown up. His face was swollen and scrunched, his little nose almost nonexistent. His ears folded in. His eyes were bruised. His blood was like boiling acid, he’d developed a hemorrhage into his GI tract, and his lungs stopped functioning. Ultimately it was the adverse affects of chemo and steroids that did it, but untreated HLH is 100% fatal, so if it wasn’t one thing, it was going to be another.

We ultimately had to make the nightmare choice to turn off his ventilator. I wanted to crawl down his throat and ingest all the toxicity inside him. On September 11 my little baby Dash took his last labored breath at 8 a.m. I chewed on his cheeks and bit his nose and kissed him over and over and over.

We had Dash cremated, and witnessed it with a small group and saw him one last time. Underneath the drapery of the container he was laid in, I could see he was just in a carboard box used for 8 ounce water bottles. My baby son. That whole journey. All that time, all that work – to end up in a carboard box for water bottles.

Mother sits in hospital room holding baby with HLH to her chest who she will never bring home
Courtesy of Jessica Leigh Stanzione

Two big lessons in this story. One is HLH awareness. Most doctors don’t even know what it is. Be informed. It is rare so you don’t need to be neurotic about it, but because it can trigger in people of any age, it’s just something to keep in mind. The second lesson is advocacy. I never stopped advocating for my son. They didn’t listen, they didn’t care. I threw things, I yelled, I proved them wrong, I called them out… it didn’t matter. I’m opening eyes to the problems of the medical field and if you are a doctor or nurse, please do not ever brush off things parents say. Especially parents who seem like they know what they’re talking about. My Dash died senselessly. He suffered for months when I pointed out exact things going on, one after the other. It wasn’t right. And I know I’m not the only one around here who’s had this experience.

Baby with HLH wearing angel wings
Courtesy of Jessica Leigh Stanzione

I can’t end this story with a super positive update of our present life. My relationship was very strained, and this tragedy did not ‘bring us closer.’ We are not the success story, yet anyway. We are slowly rebuilding ourselves and our life, and it is going to take a really long time to come back from nothing. The support that rallied for us has been the wind beneath our wings for a long time. Dash’s soul is in that sky, and I’ve never been more sure of anything else in my whole life. He likes to show up as shapes, hearts mostly, and as butterflies too, and sometimes rainbows. I can’t believe I was chosen to be his mother, that he chose me. That gift will always be my greatest honor for as long as I live, until I can fly alongside him one day… which I often wish would be sooner than later.”

Clay mold of baby with HLH foot beside picture frame of baby and fake butterfly
Courtesy of Jessica Leigh Stanzione

This is an exclusive story to Love What Matters. For permission to use, email Exclusive@LoveWhatMatters.com. 

This story was submitted to Love What Matters by Jessica Leigh Stanzione. You can learn more about Dash’s journey on his Facebook and InstagramSubmit your own story here, and subscribe to our best stories in our free newsletter here.

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