First, the "real deal" facts about Hydranencephaly
What “professionals” say… “Your baby will not survive to term…”
What we know to be true: Doctors do not hold a crystal ball to predict a child’s future, nor does anyone else. When diagnosed in utero via ultrasound sometime after the first trimester, doctors either tell parents that their child will not survive to term and advise abortion. The reality is that nearly all make their debut in to the world when given the opportunity – in fact, there have been many cases in which the diagnosis via ultrasound was inaccurate and the baby does not have hydranencephaly at all! Regardless of the accuracy of the label placed upon your child, we believe in giving them every chance to live the life they have been given and will help you to advocate for that.
What “professionals” say… “This patient does not have a brain…”
What we know to be true: The diagnosis of hydranencephaly is oftentimes not even given and doctors will simply say that the patient whose scans they are looking at does not have a brain. The impact of hearing that your loved one does not have a brain is devastating and immediately strips away all hope for life. The reality is that those persons living with hydranencephaly are missing their cerebral hemispheres to a great degree, with additional areas occasionally impacted as well; however, there is much more to the brain then just gray matter. Therefore, hold on to hope - it's aplenty.
What “professionals” say… “Your child will live a few hours, a few days – or at the most a few months to a year after birth…”
What we know to be true: Medical text dictates death within the first year for babies given a diagnosis of hydranencephaly. The reality is that thsoe babies who are given every opportunity to live the best quality of life possible, with the support of an optimistic care team to include medical specialists and strong parent advocates working together for life, live the life they are given in to childhood, adolescence and even adulthood. While the condition is life-limiting, individuals can and do live many years with hydranencephaly – the oldest we are aware of was 33 years old when they passed.
What “professionals” say… “Your loved one will not make it out of the hospital…”
What we know to be true: Again with this grim prognosis of imminent death from medical professionals. This isn’t something families hear only upon delivery of their child, but many times during the life of their loved one when they have additional health care needs requiring extra care. Persons with hydranencephaly do not live their entire lives within the confines of hospitals in most cases.
What “professionals” say… “Your child will not benefit from shunt placement…”
What we know to be true: To put this bluntly, yes your child will benefit from shunt placement in cases that they have hydrocephalus in addition to hydranencephaly. These cases require placement to keep the excess fluid build-up managed and prevent unnecessary discomfort and additional damage to the preserved areas of the brain. Fight for the shunt. If you can’t – we will. Hands down, it will save your child's life and unquestionably will give them a better quality of life.
What “professionals” say… “Your child will live in a persistent vegetative state…”
What we know to be true: Persistent Vegetative State (PVS) is a state of partial arousal rather than true awareness, one in which behaviors and actions are reflexive rather than responsive. The reality is that children are very much aware of their surroundings, interacting with the people and things in it in a purposeful, not reflexive manner. Not only do they express their likes, but their dislikes as well, showing that they are engaged and interacting in their day-to-day.
What “professionals” say… “Your child will not live a quality of life worth living…”
What we know to be true: Quality of life is a constant debate – who determines this and how is anyone to know what quality another individual is living? If we had to choose, we would choose the life full of unconditional love and unwavering support over one filled with ugliness and the tendency to not believe in impossible things.
What “professionals” say… “Your child will be in constant pain from seizures, muscle spasms, etc…”
What we know to be true: First off, this contradicts another misconception that the medical community delivers regarding a hydranencephalic person’s inability to feel pain that is noted below – strike 1. Secondly, this is delivered to parents SO frequently that babies are often sent home with a prescription for morphine and told to give generously when the baby cries, fusses, or otherwise isn’t sleeping. Throw it in the garbage – in the event your child with hydranencephaly is in pain, find the source of the pain and treat it, don’t overmedicate to “keep them comfortable” and mask it. We do not believe in bandaids.
What “professionals” say… “Your child cannot see… hear…”
What we know to be true: Persons with hydranencephaly sometimes are unable to see well or hear well, but most often with support and developmental therapies, these abilities can develop. In fact, many times they’re nosy little buggers and can see/hear everything you don’t want them to – just like a typical child – slowing their breathing to listen to conversations in other rooms, watching cartoons and fussing when you want to take over the television, etc.
What “professionals” say… “Your child will never know who you are, never recognize you, not be able to distinguish you from strangers, nor will they know who their family/friends are."
What we know to be true: This is totally false – whether they can hear their loved ones voices or recognize scents, we don’t know anything more than the fact that persons with hydranencephaly can show preference for certain people and great disdain for others!
What “professionals” say…“Your child will never eat on his/her own…”
What we know to be true: Not only do some children with hydranencephaly learn to self-feed with utensils, perhaps sloppily but effectively nonetheless, but others do eat with help from their loved ones – they love to eat, just like the rest of us, and develop food preferences and aversions just the same.
What “professionals” say… “Your child will never breathe on his/her own…”
What we know to be true: Another common misconception that leads parents to believe that medical interventions are a requirement for sustaining life – some children face challenging times that require oxygen assistance, but most do just fine on their own throughout their day-to-day.
What “professionals” say… “Your child will never live independently…”
What we know to be true: That’s true, but living independently really is over-rated, right? I mean, I would love to live my life being treated like the queen/king that I am and having my every wish granted on a whim, wouldn’t you? They will rely upon you for their care, but it will be worth every moment.
What “professionals” say… “Your child cannot feel pain…”
What we know to be true: And yet another misconception, one in which medical studies has been done to prove otherwise – yet still exists. Yes, most all those living with hydranencephaly can absolutely feel pain. Please do not test it or allow medical professionals to convince you that it is ok to perform procedures without anesthesia.
What “professionals” say… “Your child has no cognitive function…”
What we know to be true: Limited cognitive function, perhaps – no cognitive function, no. Individuals with hydranencephaly, when given the opportunity, can learn, grow, and thrive just like other human beings – just at their own pace and in their own ways. Be patient and persistent. Some have even been shown to test near grade-level in school and learn skills that exceed every expectation for their diagnosis.
What “professionals” say…“Your child cannot feel hunger, but feed them if you feel like it…”
What we know to be true: There is no way to know whether these children feel hunger, but I’m going to venture to guess that their typical alarms of disdain that are settled with a meal tell us that they do. Many parents are told in the very beginning that they do not have to feed their child if they don’t want to – please feed your child, they’re hungry and need all the nourishment they can get to live the best quality of life possible.
What “professionals” say… “Your child will never smile or laugh…”
What we know to be true: Maybe. But most absolutely do both in their own time. Occasionally additional nerve damage exists and it just isn’t a possibility, however those kids show their laughter and smiles in other ways.