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It’s been a year since one of the worst events of my life. One year ago, I was very gingerly carrying the shell of my 2-year-old boy out of the children’s hospital. After a brutal, month-long stay, we were going “home.” But home didn’t really mean much since we’d just moved to Utah and hadn’t yet found a long-term place to live.
Four very long weeks prior to this, our youngest went to bed, slept fitfully, and then didn’t wake up the next morning. The previous evening, he’d been happily playing with rocks outside, slurped down some chicken soup for supper, and then nursed to sleep around 8 pm. He didn’t sleep well, and kept waking up and wanting water. Thinking that he may be getting sick, I held his little cup, with his sweet hands clasped around mine, so he could take sips of water before settling back down again. That’s the last time he was capable of controlling his fingers, and his distressed nighttime calls were the last things he said to me with an undamaged brain.
The next morning, we couldn’t get him to wake up. He was breathing, but completely floppy and appeared lifeless. His eyes looked glazed, and he would not respond to anything we did. We were terrified.
Upon rushing to the local hospital, they confirmed something extremely serious was happening, but couldn’t give us any answers. A life-flight was arranged, and we were flown to the only children’s hospital in the state.
We then spent the next twenty-seven days dealing with some of the most frustrating neurosurgeons we’ve ever met.
It took days of us asking to consult with them before an attending neurosurgeon darkened our son’s door. They made it very plain that they didn’t see anything wrong on his CT scan and didn’t want to be involved. Informing them again and again that historically, our son’s shunt malfunctions have not been visible on imaging, we gave them the only pictures we had on us from a previous malfunction (this team was brand new to us, since we’d just moved to the state 2 weeks prior). They compared the images to scans that were just taken, but continued to make their decisions solely on scans and imaging.
Our youngest was born with Spina Bifida (myelomeningocele), and he developed hydrocephalus within a few days of his closure surgery. This is a common complication of Spina Bifida, and it was treated by inserting a tube called a “VP shunt” into his brain to drain the extra spinal fluid. The tube runs underneath his skin to his peritoneal cavity, where the spinal fluid is reabsorbed by the body. These tubes can block very easily, and he had a rough first year of life with shunt blockages that were not visible on imaging.
The neurosurgeons said our son’s brain looked “normal” in the scans he had the first couple days he was unresponsive. Then it began to show ischemia and swelling. They insisted it could not be a shunt issue, because his ventricles were getting smaller, and not bigger like they expect with shunt malfunctions (but a similar thing occurred during his previous malfunction, and we felt like we could not get that through their heads).
We got to the point where we were pleading with them to surgically investigate our son’s VP shunt, but over 5 full days went by with neurosurgery unwilling to do what we asked. Our son was still laying there unresponsive, had been intubated and extubated multiple times, and was showing the smaller signs unique to him when he has had shunt malfunctions in the past – but the neurosurgeon insisted it was from a mystery virus.
Day five of being unresponsive was our little guy’s second birthday. Before all this happened, we had an outing to Zion National Park planned. We’d hoped to soak up the sunny, high 70’s weather, and celebrate his birthday and the Thanksgiving holiday in the scenic nature preserve.
But instead of celebrating 2 years of life, we felt like he was staring down the barrel of medical neglect, with the possibility of losing his life. In the wee hours of his birthday morning, with no prior history of seizures, he started seizing like crazy.
When those seizures started, we told every medical professional that came in the room to please tell neurosurgery we needed to see them. Surely they would conclude the same as us – that these seizures pointed toward this whole thing being related to his VP shunt.
But when neurosurgery finally came, they crushed our hopes once again. They’d looked at a recent batch of imaging, and seeing evidence of increased brain pressure, they concluded it was not their problem, and said he needed a more intense workup of testing and scans in the ICU to find out what was happening.
Finally some progress
When the intensivists in the PICU heard this, they were as aghast as we were. They met with the neurosurgeon, telling him that our son already had all the tests. Everything came back negative! Nothing could be found to explain what was happening. By this point, our little guy even had iatrogenic anemia (which means it was caused by the physicians) due to the incredible amount of blood that was drawn in the testing process. He was almost to the point of needing a blood transfusion.
After the neurosurgeon met with the intensivists, we endured one of the most unprofessional bursts of anger I have ever seen a grown man conduct in a hospital hallway. Saying some very hurtful things to us, the neurosurgeon decided to do surgery on the shunt. We were relieved that what we’d been requesting for days was finally occurring, but afraid it was happening too late.
The surgery was completed.
Our son’s seizures stopped.
He started opening his eyes.
His vitals became more normal.
He began to move again.
His MRI showed relief of pressure.
But his brain had been under severe, increasing pressure for those 5 days. He was now severely brain damaged.
This was just the beginning of a 7-month nightmare in dealing with the fallout of this brain damage (I’ll be sharing more about this in a few weeks, but it appears he developed Low-Pressure Hydrocephalus (LPH) from a lot of brain tissue dying and dissolving. The treatment of it is so controversial, that LPH isn’t even listed on most of the major medical websites at the time I’m writing this).
Anoxic Brain Injury
They called it several different things during the next three weeks of his hospital stay.
Ischemia. Hypoxic brain injury. Brain damage. TBI-like injury, but without the trauma. After a while they landed on “anoxic brain injury.” The bottom line is, parts of the brain were under extreme pressure for so long that oxygen could not get to where it needed to go.
Further insult to the brain happened when a shunt insertion was botched during this hospital stay, and an episode of intense pressure occurred due to a kinked shunt tube. “Watershedding” on the brain became visible on imaging following this incident, and they misdiagnosed this phenomena as PRES, which is a syndrome where water leaves the brain cells, and then goes back into them with no damage done.
Instead of there being no damage, a tremendous amount of brain cells actually died, including vital areas of his brain’s vision center. Since that incident, he’s been diagnosed with very severe cortical vision impairment.
The brain specialists that entered the room during this particular hospitalization seemed to have a vendetta against instilling hope. Though that perception was definitely influenced by the extreme stress we were under, I was told by a worker that the neurologists were starting to put a purposeful emphasis on “speaking reality” and “sharing negative projections” because they didn’t want parents leaving the hospital with unrealistic expectations. I felt like they went over the top, and were actually very discouraging in a situation that could have used a little hope.
They shared their thoughts (that my child could be a blind little vegetable forever, and would probably remain in his current state, unable to eat, communicate, or even swallow his own saliva). I did not appreciate their pitiful looks as I told them that I knew he would decide for himself how much he wanted to fight through this.
I refused to project their negativity and hopelessness onto him. After their depressing visits, I’d whisper to him, “I know you can do it!”
There is a tremendous connection between the thoughts we think and how our brain grows and changes, and I didn’t want him latching onto any of their negative projections (Rebekah wrote more about that here).
And you know what? He is doing it!
We left the hospital holding this precious shell of what once was.
Our conversations about his condition were plagued with pain. For the first time ever, we discussed when we might enact a DNI or DNR. We couldn’t bear the thought of perpetuating his suffering, if he continued how he was with no improvement. At the time, he seemed very uncomfortable (we now know he appeared to be in pain because of ongoing shunt issues he was experiencing. I’ll be posting more about that in the next few weeks).
He could not even handle his own secretions, so he would gag and choke if he wasn’t leaning sideways (so his drool could flow down the side of his droopy chin). This inability to handle his secretions was one of the first major things to show improvement as his brain started to heal. It took a few months, but he needed his suction machine less and less.
Even with ongoing issues due to the LPH, he started to give us clues that he was still in there. Fourteen weeks after going unresponsive, he gave his first “post-damage” laugh when my hubby Micah was playing peek-a-boo with him on his lap. We could hardly believe it until we’d gotten him to repeat it a few times! He was experiencing what seemed like uncontrollable head “tics” at the time, and wasn’t giving many indications of understanding what we were saying or doing – until that moment!
That was so exciting!
He also began to move his arms again. It started very jerkily, and to this day his movement is quite compromised by the CP-like effects of the damage he suffered. But he started with arm movements…then fingers…then fingers independent from each other. He still doesn’t grasp or reach for anything (and I miss that reach for mommy so much), but I have faith that he will be able to do that again someday.
I weaned our little guy off his feeding tube after a brand new neurosurgeon in a different children’s hospital resolved his shunt issues. This neurosurgeon was willing to base his decisions on our son’s history (versus only considering imaging), and he listened and agreed with our perceptions and goals. His desire to help our little guy resulted in a shunt surgery to manage the low-pressure hydrocephalus, which took away our baby’s pain and suffering, and left us with a happy little guy.
Our son had been fed via NG tube for 9 long months when I pulled the tube in September of 2018 after a 6-week weaning process. The weaning was intense, but so worth it!
Eating orally again has helped him regain some communication skills (like opening his mouth when he wants more food), and gives him control over his food and fluid intake that is impossible when tube fed.
A year ago, the neurologists looked at me with pity when I told them what I was hoping for. They felt the need to burst my bubble with “reality.” But our little guy has proven that he did not need pity. He needed to be nurtured and cared for, enabling his brain to recover some function and continue to make advancements.
Though it was very hard to tell if he was thinking much of anything those first few months following the damage, we spoke to him like normal. There was never a point where we “decided” to include him like we used to. It was different since he wasn’t interacting with us at first. But we continued talking to him, singing to him, and playing with his fingers and toes. We knew he was still there, and just trapped inside his confused body.
Looking to the Future
It’s not easy to look back on memories and see everything that’s been lost. We mourn that, and our little buddy’s life will be continually impacted by this brain damage for as long as he’s here on the earth.
We can’t change the past, and we know that God can work even the worst of things together for our good. We’re thankful for that promise.
We’re moving forward, one day at a time (and with a new neurosurgeon). We’re not giving up hope.
We’ll be cheering him on for as long as it takes.
He has accomplished so much in one short year.
“We know you can do it, buddy!” ❤
I made a video compilation that shows our son before the brain damage, after the damage, and now.
You can view it below, or by clicking this link to go to our YouTube channel:
Anoxic Brain Damage – 1 Year
Do you know anyone that’s suffered severe brain damage?
What has their recovery and life been like following the injury?
I’m not the least bit ashamed to admit I cried (with joy) at your son’s smiling face after his shunt surgery! What a sweet boy you have! I am saddened that he and the rest of your family have had to endure this trauma, but I admire your strength, resilience, and refusal to give up hope. You clearly understand all the medical details of the situation. It’s unbelievable that the original doctors refused to listen to you. I am so glad you found a new doctor who is on your team. I am so touched by your story that I’ve signed up for your email list. I want to hear more about your fierce little fighter!
Thank you so much for your kind words, Lori! That video clip when he was “all smiles” after surgery gets me every time too. ? It was such an exciting turning point.
We’re honored to have you join our tribe! ❤Sarah
I swear, there are some idiotic doctors out there. I love that he’s proving them wrong. -Another Warrior Mama
I wish it wasn’t such a huge battle to find quality care for our complex kiddos – as you well know! ❤Sarah
What an inspiring post. As I read the post, my heart ached for you and what you and your family were going through. I was so moved by your determination in fighting for your son. You went with your gut, refused to give up hope, and continued to fight on. And it is wonderful to see his progress. I will be praying for your son and for you as you continue to move forward in hope.
Thank you so much for your prayers, Jelane. God has done mighty things in our hearts and lives through the prayers of his saints, and we’re so grateful. ❤Sarah
Thank you for sharing your story. My heart goes out to you and your family. I’m so happy your son is finally doing better. It’s really sad that we have to put their lives in the hands of doctors who sometimes don’t seem to care enough. Way to keep pushing on and keeping hope throughout this time. It’s all in Gods hands and even though we may not know why we have these struggles, He has the master plan. I will keep you and your family in prayers.
Thank you, Kendra – I’ve asked a lot of “whys,” knowing I probably won’t know the full answer on this earth. I’ve definitely seen God work some things together for our good, and am thankful for those glimpses He’s been gracious to give me. ? Appreciate your prayers! ❤Sarah
Thank you for sharing your story. I have a dear friend who went through a medical crisis involving her son (who had leukemia) and she herself went through a lot emotionally. Just like my friend, you are one brave and strong mom. I do not know what I would have done in that situation. I am praying for you and your son and your whole family. May the Lord’s healing hand be upon your son!
I’m sure you would fight for those you love if you were ever thrown into a medical crisis! Hopefully we’ll never find out though, right? ? I’ve definitely learned a lot, and still learning… Thank you for your prayers, that means a lot! ❤Sarah
Hi Sarah, Thank you Sarah and Family for being Fighters in the Lord for Jotham…Life is such a gift.. That is quite a story and I love that God has put in you, His Spirit to battle for Jotham’s life…He is so beautiful with his bright eyes and sweet smile..I love your courage and I love that you are Leaning on and Trusting God the Creator and Sustainer of all life..He is so trustworthy with all that HE gives us and I am so thankful that He is the Glue that holds us together..Col. 1:17..Please know Sarah that I will be praying for you and little Jotham and will be Praising God for Jotham’s wonderful progress. Thanks for sharing your journey and your heart…
Thank you, Betsey – appreciate your prayers so much!
God gives beautiful gifts. ❤Sarah