For the past week an article has gone around explaining how a woman is carrying her baby to term so she can donate her daughters organs. Her husband subsequently posted a picture and talked about how amazing she was. To one who’s never dealt with child loss, this article may look inspiring and marvelous. It may spark others to want to donate their child’s organs, which is an amazing thing. However, this article has created a riptide in my bereavement community.
The article was poorly written, the facts were not 100% accurate and it basically sensationalized false facts. That’s terrible reporting and what’s worse is that people have contacted these news places asking for them to fix their mistakes and they refuse.
In one article they state that this baby doesn’t have a brain. Actually the headline even has “baby with no brain” in it. That’s not accurate. Anencephaly babies do have brains, maybe not fully formed, but they do. I would know, I saw my daughters. I’ve seen countless pictures from other parents who’ve shared their children with our group. All of them have brains, some more than others. What they don’t have is part of their skull. A skull is vastly different from brain.
“If I carry her full term, can we donate her organs?”
That statement from the parents has ignited questions about why they’re carrying to term. Is it only for their daughter to donate organs? Is it not so she can live as much as she’s supposed too? Their daughter should not be carried to term just for the sake of being an organ farm. Not to mention there’s many, many factors in donation. The child’s weight, if that child survived birth, the states stipulations and if there’s anything else wrong with said child. Even if your child is 100% healthy except for missing part of their brain and skull, that doesn’t automatically set you up for donation. Then what happens once their child is born and can’t donate? Does that diminish her life?
“…many defy odds and live for months or years”
No. Just no! The majority of babies who have Anencephaly die within hours. Yes, there are a few cases where babies have lasted longer than the typical case, however saying that “many” defy the odds is offering false hope. The ones that do survive don’t just have Anencephaly, they have other things that make their chances greater. Look up any story where the Anencephalitic baby has survived and you will see that they don’t just have Anencephaly. There’s various factors to determine if they’ll survive and no one knows if they will until it happens. So much more often do babies die of Anencephaly than live. That’s the facts. That’s not being pessimistic or diminishing that child’s chances, it’s reality. And those who’ve had this reality thrust on us, understand that, it’s those who haven’t that don’t understand.
“…where we found out Eva wasn’t perfect”
That was quoted from this child’s father. I do not know a single parent who doesn’t think that their child wasn’t perfect. Anencephaly babies are perfect. Perfect for them, perfect for their families and perfect in all the ways that matter.
The responses to these articles is chalked full of people thinking this couple is amazing. I’m not trying to take away from that, I just wish they wouldn’t make them out to be martyrs. So many aren’t considering what this will actually be like for them. They just see how “selfless” and “amazing” this couple is and stop there. They don’t really think about the fact that a baby has to die in order to donate its organs.
I understand that these parents probably have every ounce of love for their daughter. That they want the best for her and that these articles are a way to educate others. Me and many others just wish these exposé were accurate and painted the real picture of what neonatal donation and Anencephaly is like. We feel like this story has become a “heartwarming tragic tale” that was brought about to make others feel good about themselves.
For those sending these news articles to us bereaved parents or soon to be bereaved, please stop. We understand that you’re trying to comfort us and offer us hope. Many times it doesn’t. Most often is makes us angry or upset because we’ve read every article and snippet of information about Anencephaly. When you send us those prints, you’re not helping us. In reality you’re sending it to us to help yourselves. That sounds harsh and mean, but it’s not, it’s reality. You don’t know what to say to us, so you send something that comforts you and makes your reality a bit easier to bare. Those well-meaning links ground you and make you believe something other than death of a little baby is going to happen. Don’t worry, we don’t hold it against you, we just wish you could understand that we don’t need those miracle stories. We don’t need the ones that defy odds, or are about what can happen at the end of someones life. We know all of those things. If you’re going to send us something, send us to blogs who tell it how it is. Mine, or Stacy’s or anyone else that doesn’t sugar coat the truth and act like everything will be alright. Those are the types of things that are helpful.
Stop assuming we’re going to do organ donation or milk donation. Both of those are highly personal and for you to assume we’re going to do that is just wrong. If your child was hooked up to a ventilator and was going to die, would you want others asking if you’re going to donate their organs? Would you feel pressured to do so even if it wasn’t what you wanted to do? Would you feel violated that someone would even ask that question while your child was about to die? When all you want to do is spend as much time with them as possible? Trust me, it’s violating and rude. In the throes of grief would you want to attach a machine to your body multiple times a day? A physical reminder that what that machine is taking isn’t going to your child? No? Good, then don’t ask us if we’re donating milk. Stop asking personal questions unless we’ve specifically invited you to ask us.
To those reporters who’ve taken it upon themselves to make another news article about this couple, fact check. Research and talk to people who’ve been through those things you claim. If you’re going to educate the world about something, make sure it’s correct. I wish the creator of Anencephaly.info got the attention this couple has. She has created a Facebook group for us, she has created an entire website that has so many resources on it. Stories and accounts of births and deaths of babies. She deserves this kind of publicity; for bringing us all together and giving us up to date and accurate information.
For those of you who feel this way and feel like you’re not the only one, I am with you.