Hypoxic Ischemic Encephalopathy

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    Advice for Parents of Children With HIE, From an Adult With HIE

    The news that your child has sustained brain damage can’t be nice to hear. You probably imagine all sorts of horrible scenarios and maybe you looked up your little baby’s condition and got here. I wouldn’t know about that bit. But I’m writing this to let you know that those worst-case scenarios you’ve read about probably won’t come true. Like half of babies diagnosed with hypoxic ischemic encephalopathy, my condition is mild. It wasn’t (and isn’t) always easy. My childhood was an interesting time and I don’t doubt that my parents struggled at times with my condition. I had seizures when I was little, have Tourette syndrome, had a minor speech delay and have been assessed for just about every neurodevelopmental condition under the sun – although nothing stuck. My mum thought I was dead when I was born. The midwife noticed the cord wrapped around my neck and I had been born in “poor” condition. I needed help, but she still struggles to talk about the details. But I am 21 now. I twitch and click more than most consider “normal.” I still get totally overwhelmed from sensory overload sometimes. When this happens, I struggle to talk at all and go back to sign language. I become so anxious that I struggle to breathe or think and have mood swings that confuse me. I’m also training to be a nurse and have received fantastic feedback from each ward I have worked at. I have a nice circle of friends and an ability to beat anyone at Mario Kart while chatting their ear off. Unlike some people my age, I have a fantastic work ethic brought on by years of having to fight to keep up. This morning I drove to a nearby town, got ice cream with a school friend and watched an online lecture on the anatomy of the kidney. I have hypoxic ischemic encephalopathy, which I can’t spell without checking a thousand and one times. I have a milder case, so I can’t speak for everybody and I won’t try to. But I think I can speak for me. You’ve probably been told that your child’s condition is irreversible. But the beautiful thing about children’s brains is that they can learn new things better than adults. We often adapt better than an adult with the same brain injury. We will do better with your support. We have things that we are proud of, that we are good at and that we are passionate about. This is true whether your child has a mild case or a severe case. There are many thriving children and adults with varying severities of HIE. Your worst-case scenario is not a guarantee.

    Betsy Pilon

    When My Son With HIE Had His First Seizure

    Just a few days before the Christmas holiday, my 4-year-old and 8-year-old children were buzzing with excitement. They begged us to have sleepovers in each other’s rooms, and we happily obliged, seeing their joy earlier in the year during the pandemic when they were looking for new adventures in an uncertain time. My husband turned back on the video baby monitors we’ve continued to use well out of infanthood, “just in case they decide to cause shenanigans in the middle of the night.” At 5:30 a.m. just three days before Christmas, something woke us up. “Was it the dog? Was our pandemic puppy barking? If it is, I hope Mike will get her and let her out so I can get some additional uninterrupted sleep,” I thought. And, then we both heard a jarring rhythmic, clicking and gagging noise from the monitor. We both got up quickly, heading into our daughter’s room. Our son had been sleeping on the floor, his choice despite our many efforts to have him sleep in his bed, and we caught him unresponsive in the middle of a tonic-clonic seizure. Immediately, like a well-orchestrated symphony, Mike ran to get his phone to call 911, I made sure our son was on his side, as his fixed gaze turned my stomach, and I checked his breathing and vitals “…good… he’s breathing… good… he’s not turning blue… is this really happening? I need to get this on video.” I grabbed my phone as my husband whisked our 4-year-old, who had woken up thinking her brother was having hiccups, to our bedroom. I captured roughly 9 seconds, which was plenty, and continued to monitor and pray for what seemed like eternity for the seizure to stop. Shortly after it did, lasting about 2-3 minutes, I asked our son to give me a thumbs-up, and he quickly did. A few minutes later, he was able to verbalize answers to questions, and was slowly coming out of the fog. Just as he answered, three EMTs were entering my daughter’s bedroom, responding in less than five minutes to our house, as my husband threw a mask at me to put on. By the time they got him in the ambulance, our son was cracking jokes, wondering why it was so cold outside, and exclaiming how excited he was to ride in an ambulance. My heart was pounding as I climbed into the back of the ambulance, on the way to the trusted hospital that saved his life in 2012. When Max was born in 2012 with HIE, he was a kick count save, but very very ill. He was transferred to the large high-level NICU in downtown Detroit, and spent roughly three weeks there, where he, gratefully, never experienced neonatal seizures which are quite common in HIE. When we were told of the extent of injury they saw on the MRI, and long-term outcome possibilities were mentioned, we knew he was at risk for developing epilepsy. But each passing year he didn’t, and our neurologist told us this was good news and each year seizure-free meant it was less likely he would ever develop them. In my work with Hope for HIE over the last two years, I have represented the organization in several epilepsy-focused groups, despite my own child never experiencing a seizure at that point. I learned about infantile spasms and the connection to HIE, saw friends whose children were previously seizure-free develop them at ages 4, 6, 8… and I learned about seizure first aid, and the importance of capturing seizures on video for medical evaluation. The reason my husband and I were able to keep calm and succinctly implement these seizure first aid best practices, is because of the community education that comes from connecting with over 6,000 families worldwide. Currently, we are working to develop more seizure and epilepsy-related educational programs for our community. I want everyone who has to go through this terrifying experience to feel empowered and supported like we did in this most vulnerable moment for our beloved child. We don’t know what this next chapter will bring, but we know we will once again find the best ways to support our child through this new plot twist because of Hope for HIE.

    Community Voices

    Complications of birth injury

    When I was born the doctor told my mother I may have lost oxygen to my brain. I also had a hole in my heart, and saw a specialist until I was eight years old. When I was three months old I saw a neurologist because I was not sitting up straight. I always had a hard tim with balance, and never learned to ride a bicycle. As a young adult I had seizures. Later in life, I did a search of these symptoms and came up with hypoxic ischemic encephalopathy (HIE). This term seems to fit me, but doctors never put all the pieces together.
    #Undiagnosed

    What This Yellow Chalkboard Taught Me After My Daughter's Birth Injury

    When I was pregnant with my first child, the whole world was one giant cliche of unicorns and ice cream. I was so grateful and lucky and happy and excited and never once did I stop and even consider anything bad happening. Things were great! Everyone was healthy. This is what I always wanted. I obviously spent an exorbitant amount of time planning and decorating my baby girl’s nursery, agonizing over every little detail until it was just perfect. Because that’s what you do when you live in the la-la land of first-time parenthood. Part of that decor was a small little chalkboard inside a fancy yellow frame that I would place on the side table next to our rocking chair, where I would undoubtedly spend many hours snuggling my beautiful babe and basking in the glow of new motherhood (ha!). The week I turned 37 weeks, I painstakingly wrote out her name on that chalkboard, making sure it was just perfect. We were ready to meet our little girl! But then things changed. I’ll save the gory details, but during my labor and delivery, my sweet baby sustained a severe brain injury. She lost oxygen and blood flow to her brain in an event called hypoxic ischemic encephalopathy (HIE). We didn’t know the specifics at first — she was in the NICU with seizures for a few days before we had an MRI done and found out the extent and the meaning of the damage. The whole medical team brought us into a room, sat us down and told us that essentially our feisty little redheaded girl would likely not survive much longer. If she did, she would have a very low quality of life and probably wouldn’t ever meet any milestones or even recognize us. We were obviously devastated. In the midst of this overwhelming grief, later that night I found myself awake, attached to the breast pump (instead of my baby) in that perfect nursery we had prepared. I looked over through my swollen and blurry eyes and saw that yellow chalkboard with her name written on it. And I suddenly had the realization… I might have to erase it. The thought broke me. I don’t know if there was much left to break, but the very last piece of my heart shattered right then and there. The days continued to creep along and we soon were able to bring our baby home. We were terrified and traumatized and barely functioning but there we were. Home. All three of us. Time passed and our girl continued to make progress — on her own timeline and in her own way, but it became clear to us that she was going to stay and fight. While she definitely has her fair share of challenges, our girl has blown those early predictions out of the water. We still live a very different life than we had envisioned, but it is a good one — full of laughter and joy. I have done many things as a parent that I never expected I would. But one thing I have never done, more than seven years later, is erase her name off that chalkboard. It may be a bit smudged and faded, but I don’t think I will ever be able to wipe off those words. In my darkest time, I thought I would have to, but now I can see that my Madeline Jane will not and cannot be erased. No matter what happens, her soul is just too important.

    Community Voices

    Nursing and in home care during COVID-19

    <p>Nursing and in home care during <a href="https://themighty.com/topic/corona-virus-covid-19/?label=COVID-19" class="tm-embed-link  tm-autolink health-map" data-id="5e678dcff3e6f44cb2d93fd4" data-name="COVID-19" title="COVID-19" target="_blank">COVID-19</a></p>
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    Community Voices
    Community Voices

    Gratefully Grieving

    Have you ever had a feeling that you almost can’t describe? A feeling that you’re really not even sure if anyone else has ever felt? Maybe it’s embarrassing or you think nobody else will understand so you keep it to yourself. I have this feeling almost daily.

    My daughter was born into mass chaos. She was completely lifeless and grey. She was rushed out into the hallway and resuscitated and immediately put on a ventilator. Within an hour she was on life support and put into hypothermia. It turns out that we had what is known as a fetal maternal hemorrhage and it basically means that her body bled into mine while she was still in the womb. She had no blood in her body, which meant she wasn’t getting oxygen to her brain. For days the doctors prepared me for her to die. The neonatologist was constantly telling me how sick she was and how he’s never seen a baby with FMH with as little blood as she had bounce back, and at the very least she would be severely brain damaged.

    When she was 14 days old she had an MRI that showed massive brain damage. The neurologist, a neonatologist, and a few others came in on day 15 and explained that she would never live a normal life. She would never eat on her own, she would never talk, she would never walk, and she would be solely dependent on her dad and I for the rest of her life. They diagnosed her with a condition called #PeriventricularLeukomalacia secondary to #HypoxicIschemicEncephalopathy. It meant that she would have #CerebralPalsy as well.

    Fast forward 2 years and she does everything that she was never supposed to do, except walk. She talks constantly, she feeds herself everything that we eat, she’s never had a feeding tube, and she’s working hard on motor ability so that eventually she can walk.

    Here’s where that weird feeling comes in…

    As her mom who once thought she would live in a vegetative state, I am obviously overjoyed that she couldn’t be further from a carrot, but I’m also sad. I’m sad for her that she has to work so hard at everything, but I’m so thrilled that she has abilities that exceed all expectations. I’m sad that she’s 2 and instead of going on Friday morning play dates we head off to physical therapy, but I’m happy for access to amazing therapists who are helping her everyday. I am extremely thankful for a daughter who tells me “love you too!” but I grieve the daughter who I chase around the kitchen and licks the spoon after we mix up brownies together.

    I get so caught up in how I think I “should” feel rather than just letting myself feel, and I think a lot of special needs moms do the same. We have it engrained in our minds that we should be grateful for EVERY LITTLE THING, and we are, but it’s okay to also grieve those things we don’t have and don’t get to experience. Maybe I’ll start referring to this as grateful grieving so I feel okay about letting it happen. You should do the same if you find yourself in this position. Give yourself grace mama, and remember that emotions are normal and we’re buckled into this rollercoaster together.

    #NamelessFeeling

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    Dear Teachers, Please Presume Competence When You Work With My Child

    “Oh, she is just so sweet!”“What a precious little angel you have!”“Is she always this easy-going?” Umm… nope. Nuh-uh. No way. It’s laughable, really. If you spend some time in our home and get to know my lovely little girl, these statements are so far from our experience. And yet, these are the type of comments I hear most often from teachers, aides, principals, etc. Well guess what? They are all being played. Now, before I continue, because the internet likes to mom-shame and some people take things way too seriously, I feel like I need to interject here the fact that I love my kid. She’s probably the coolest one alive and I am basically obsessed with her sheer awesomeness. However, that being said, she is no angel (but is any child, really?) This girl is so many things: smart, sassy, goofy, mischievous… but sweet, angelic and precious are not the first things that come to mind. And I honestly love that about her. My daughter sustained a severe brain injury during her birth and as a result has been diagnosed with hypoxic ischemic encephalopathy (HIE), cerebral palsy, and epilepsy. She has significant delays and obviously needs some extra support at school. But she is extremely bright and her levels of manipulation and impishness are right on track for her age. She is only 5 years old, but she has already caught on to the idea that she is cute. Like, really cute. She is cute, and she has a disability and people feel sorry for her (insert eye-roll).   Please, make her work! She is not at school to be cute for you. She is not there to learn new and creative ways to get out of working. And she is definitely not there to watch other people doing everything for her. It’s not OK. Yes, she is cute. Yes, she has a disability and will need extra help in some areas. But I need to know, as her mother, that you are seeing her potential and helping her to reach it. She is very capable of many things and I need to know that you know that. Sending your child off to kindergarten is hard… for any mom. But for a mom with a child who has disabilities, it is downright terrifying. And this is my biggest fear. That she will be coddled and bombarded with help. I want my daughter to have as close to a typical experience as possible and I want her to learn. School is not glorified daycare. She can do hard things. Repeat after me: she can do hard things! It may not look hard to some, but all the while, she is learning about resilience, toughness and persistence. So please, be tough on my kid. Don’t let her get away with not trying. She doesn’t have to be able to do everything correctly, but make sure to give her the push and the time to make the effort. Presume the utmost intelligence and competence and give her a sturdy platform to stand on — just like you would with any other child. I want her to be educated and be the best possible version of herself. I may not know just what that looks like, but I sure know what it doesn’t look like. Sincerely, A “mean” mom who gives a whole lotta craps.

    Kate Detweiler

    The 'Wait and See' of Being a Parent to a Child With Health Challenges

    Many parents find themselves in the place known as “wait and see.” Sometimes they’re in this place in a NICU when a baby was born too early and they are told to wait and see if she can sustain life outside the womb. Sometimes it’s after a baby has made it home from the hospital, but they’re waiting to see if he can achieve milestones like sitting or crawling. Wait and see if your child responds to this treatment. Wait and see the test results. Wait and see if the cancer comes back. The wait-and-see place feels a little familiar: This is my family, this is my house, this is my life. But there’s a hazy fog everywhere I go, and it clouds my vision and my perspective. Was that a seizure? Is that normal? Everything I see indicates a problem. Everything is a symptom or a side effect. It impairs my ability to see the future beyond this thing which we are trying to achieve. What is the next treatment if this one fails? How will we go on if our child does not survive? It taints my memories of the past: Did I cause this? Should I have done something else instead? The fog in the wait-and-see bears weight. It is heavy on my shoulders and my heart. Hard to breathe, hard to sleep, hard to wake up. Hard to concentrate on what is before me and what is true. It is lonely and scary and lost to be in the fog. Wait-and-see is a place on the map we did not expect to go and cannot avoid. But there is more to this place if we can learn to see through the fog: Wait and see the strength you didn’t know you have. Wait and see the miracles that occur when your child defies the odds. Wait and see how the world is inspired by what you’ve brought into it. Wait and see how love conquers all and the light that is love shines like a beacon in this dark place. If you’re there, waiting to see — don’t let this time pass without also waiting to see what is good. Let love be your beacon through the fog, and let it lead you to the moments you would otherwise not see: the sweetness of your sleeping baby’s face, the strength that comes from those who are going through this with you, the hope that grows even in the dark.

    Betsy Pilon

    If You Could See What I See When I Look at My Child

    If you could see what I see… You would see a little boy who is full of laughter, who is full of imagination, who is full of life and who is full of adventure. If you could see what I see… You would see a fighter, you would see a great friend, you would see a hard worker, you would see a natural athlete. If you could see what I see… You would see only the good, only the possibilities, only the victories and only the bright future ahead. If you could see what I see… You would see an unexpected road we’ve traveled, but one that is truly breathtakingly beautiful. But instead… You see heartache. You see disability. You see brain injury. You see difficulty. I’m afraid what you see is a “worst case scenario.” Oh how I wish people would only look at this kid through my eyes. Maybe the stigma around brain injury wouldn’t be so hurtful and harmful. We want to hear your story. Become a Mighty contributor here .