Judgement Free

I don’t usually comment on blogosphere controversies. I read, I observe, I may even re-tweet a sentiment I agree with, but I try to stay out of that kind of thing.

Today I’m breaking my streak to speak about something that is so personal to me that I simply cannot sit back and say nothing.

This week a woman that I don’t know lost her baby. The baby had a heart condition known as Hypoplastic Left Heart Syndrome–this is basically a failure of the left side of the heart to develop. Charlie, if you somehow missed it, was a heart baby as well. All of the families that we shared the ICU waiting room with had children with heart issues. During our stay, there were three HLHS babies on the floor. HLHS is an extremely dangerous condition. Children that have it must undergo three heart surgeries as children. After the first surgery, they actually keep the baby completely asleep with it’s chest open and plastic wrap over it to make sure the surgery was done correctly. Those are some home movies I could have skipped.  I keep in touch with one of our former roomies on Facebook and her little one went in for surgery number three two days ago. Recovery is rough and even if the operation is successful, he’ll most-likely be on the transplant list by his eighteenth birthday.

So this baby had a very serious heart condition and he passed away. Before his death, the parents opted to have their child circumcised. A doctor performed the circumcision in a hospital and recovery wasn’t as smooth as they hoped.

At some point, a popular blogger named Dr. Momma decided to post about Baby Joshua’s death. The headline read Baby Dies from Circumcision Surgery Blood Loss and Heart Failure. She also reposted two of the posts written Joshua’s mother and two of Joshua’s pictures. All without consent from his mother and without fully disclosing Joshua’s pre-existing heart problems.  Dr. Momma’s followers then began leaving hateful messages for Joshua’s mother on her blog. So many that she had to take down some of her posts.

There are just so many things wrong with this. There’s the stealing of another person’s content and pictures for starters. There’s the the co-opting of another person’s heartache for your own agenda. There’s telling someone else’s story without all the facts, without a medical degree (Dr. Mama is a PhD).

Four weeks after Charlie was born, he had surgery to place a g-tube in his stomach and he was circumcised at that time as well. I agonized over the decision to circumcise him. It felt barbaric. I was uncertain. I was also living in a hospital, my sanity stretched thin by pumping schedules, endless doctors, predictions about Charlie’s future, and a myriad of other details.

I trusted the people around me–people who were getting sleep, medical professionals. We OK’d the surgery. I cannot, cannot imagine how I would feel if something had happened to Charlie after that. Even worse, if someone tried to blame it on me or an elective surgery. I’m not certain my tenuous mental state could have handled something like that. Really.

In Joshua’s case, the doctors feel that it wasn’t circumcision that caused his death–rather, the fact that he was born with only half a heart.

I hurt for Joshua’s family. I am angry at the people who feel that his story is theirs to turn into a soap box. I’m angry that a grieving mother has to deal with anything more than the death of her child–isn’t that enough?

I’m not sure I would circumcise future children. My husband and I were disturbed after we saw Charlie’s circumcision. It looked painful to us and not “no big deal.” That said, I could never, ever condone the actions of Dr. Momma or her readers–this child was loved and prayed over, and I have no doubt that the parents thought they were making the best decision with the information they had available.  Those that desire to end circumcision would have done themselves a much better service by reaching out with love and compassion. Hatred rarely changes things and it usually makes them worse.

ICU Baby

First time I held Charlie--two weeks old

Edit: Dr. Momma has now taken down pictures and text that were not hers and that she did not have permission to use. I am thankful for that.

Related Posts Plugin for WordPress, Blogger...

Comments

  1. Very well said. Thank you for being one of the good-guys. My heart is so broken for this family, and the two others who lost their babies in the past week.

  2. I have been watching this on Twitter and was horrified by Dr. Momma’s conduct – everyone is entitled to their opinion and I’m certain she feels strongly about her position, but taking from a family’s personal tragedy and manipulating the facts to spread your own agenda is inexcusable.

  3. Sorry, but the “good guys” strap a helpless infant down and cut into his genitals while the “bad guys” try to save him?

    • The good-guys don’t bully and exploit a grieving mother, regardless of whether or not she made decisions they disagree with – especially without knowing all the facts.

    • Doctors cut the infant’s genitals and I, personally, had nothing to do with it. The people aren’t trying to “save” this little boy–he has already passed away. There’s a time and a place for advocacy, but these actions were misguided.

  4. AmieSaint says:

    People with an agenda are usually scary and ruthless. To them, whatever helps their agenda is fair game, regardless of who it hurts or what other consequences arise. They tend to deal with things in ignorance instead of intelligent action and open-minded discourse. It’s not enough that they believe in something, they have to make everyone believe it, too. And if you don’t, you’re an evil person/parent/citizen.

    To the rest of us they look cruel and heartless.

    If you believe in something you should follow it. But you shouldn’t spew hatred at someone who doesn’t believe the same thing, especially at such an awful time.

  5. I am absolutely stunned. Shaking my head in disgust and agreeing with Nickie… thanks for being a ‘good guy’.

  6. I’m always amazed at the odd perception that parents of a child with special needs shouldn’t do certain things because it puts the kids “at risk”. Why are these parents, in addition to all the challenges they have to take on, also seen as reckless for doing something in their child’s life that they feel is important for their personal reasons. Why is there a microscope placed on them in this way? Should we coccoon the kids even more than they already are? seriously. Life is about living.

    Mel

  7. What a horrible bunch of bullies that they can’t let that poor family grieve in peace. Sometimes people make mistakes, but that poor mother shouldn’t be crucified for it! Judgemental people make me crazy…

    Good for you for standing up, Katy!

  8. Thank you Katy.

    Some times, even those who think that they are informed, like Dr Momma, need to mind their own business. She is lucky. Remember the saying “therefore but by the grace of God go I”…sorry I couldn’t even read what she wrote. To exploit someone’s grief and take the picture of the child without permission is just wrong.

  9. Thank you so much for writing this post.

    I heard about baby Joshua’s death early yesterday morning and was appalled by Dr. Momma’s continued tweets about how he had been “murdered by circumcision”. Apparently there has even been reports of rallies and picketing at his upcoming funeral by “intactavists”.

    All this makes me sick. Sick that instead of support for a mother who has to endure the death of her child she is met with ridicule and malice.

    On a personal note, I chose not to circumcise my two sons. At the time we made the decision based on our belief that it just wasn’t a necessary surgery. The decision was made easily and we never really thought twice about it. My family was mortified that my sons would be “different” from their peers and were unapologetically brash in warning me that the boys would be teased someday when school required them to change for gym class. Frankly, I didn’t care what they thought.

    All that being said, I NEVER felt that a mother who chose differently from me was wrong or in some way hurting her child. It was just a different choice…life is full of them.

    Again, thank you so much for showing your support for Joshua and his family. While his death is unfathomable the true tragedy has been witnessing the hatred spewed at his parents by mothers who should think twice and keep their big mouths shut.

  10. I have one little guy that I chose not to circumsize.

    A good friend of mine had her little guy circumsized during open heart surgery for TOF.

    Not a choice I would have made but her choice.

    I never felt like I had any right to have an opinon. Her kid had TOF, mine didn’t. I’ve never sat in CICU. I’ve never given Lasik. I’ve never owned a stethoscope nor taken my kids pulse ox.

    I don’t get all that goes along with heart kids. I haven’t earned the right to have an opnion.

  11. I hadn’t read about this anywhere, so thank you, thank you for writing about it. How terrible to accuse a family in so much pain. So wrong.

  12. My God. My own daughter was born with double inlet left ventricle heart defect, so it doesn’t take much of a stretch of imagination to myself in the parents’ shoes, so to speak. As it is, Namine almost died the day she was born.

    As for the mental stress, it’s bad enough having your child go through open heart surgery. I cannot imagine what hatemail would do. I bet I would snap.

  13. Thank you so much for posting this, Katy. I might not have known about this family’s tragedy otherwise, and now I can think, good, kind, healing thoughts and prayers for them.

  14. This is absolutely horrible! I have had run-ins with this “lady” before. She is a terrorist and a psychopath! One of her other strong positions is on pre-natal testing…….So that we can completely eliminate people with Down syndrome, all trisomy’s and any other difference before birth. She is an absolutel whack job!!!!!

    • Stephanie: What can I even say? Eliminate a group of people because they’re different? That’s incredibly disturbing.

  15. A couple things.

    Growing up I had a friend who had that same heart condition. He lived until he was fourteen. His name was Troy and he was beautiful. I remember his big eyes and purple lips.

    Owen too had his circumcision done while under anesthesia to have his g tube placed, and also to remove his left kidney. All the doctors were in agreement that circumcising him would reduce the chances of infection…. Because as a nurse who deals with the elderly, a foreskin that is not tended to properly is asking for infection. We weren’t taking any chances.

    And I hope that Dr Momma feels like a very bad person. A mean bad person. I’m kind of curious, but I will not be visiting her blog and giving her a site another hit.

    You rock for posting this. Well, you rock anyway…

    • You know, now that you mention it, I’m pretty sure potential infection was brought up for us as well. In times like that, there is SO MUCH going on–and no sleep, and the constant threat of death–it’s hard to think clearly at all.

  16. I get very irritated at people that have no idea what grief is, and cannot see beyond their own beliefs. Home births, no circumcision, etc. Everyone else causes the problem……when sometimes it’s just nature. Let the poor family grieve.

  17. Mark Lyndon says:

    This baby was stable before the circumcision at 1pm on Tuesday, and died on Wednesday morning. The circumcision caused arterial bleeding for about five hours, and now everyone wants to say that the death was unrelated to the circumcision.

    Count me as one of the bad guys, because I don’t think this baby needed to die. It’s a tragedy, but it’s not the first time something like this has happened, and it won’t be the last, and every time the doctors try to blame something else.

    I doubt that most people would be so keen to defend the doctors and parents if this had been any other kind of elective surgery, or if a baby girl’s foreskin had been cut off instead of a baby boy’s.

    • I think it’s important to note that the issue here is not whether or not circumcision caused this child’s death. Rather, the treatment of this family following their decision to have their child circumcised. They opted for something that they believed was beneficial for their child–many people in this country believe that circumcision is healthier and cleaner. Whether or not that is true is beside the point. The point is that these parents were doing the best they could with the information that they had available. Making it a debate about circumcision is a red herring. There is a time and a place to discuss circumcision and to educate people about the risks–Dr Momma overstepped the bounds in her zeal to make a point. That’s what makes her a “bad guy”–not her opinion about circumcision.

    • Mark, you also have to realize that a child with such a severe heart condition can go from stable to clinging to life in a matter of moments.

  18. I had not heard anything about this. That is just awful. I am all for people having their own opinions about things and prefer that we don’t all agree on things – it makes this world much more interesting. However, using your opinion and only part of the facts to berate a grieving family is just wrong. Just because we live in a country that allows free speech (and I am glad we do), doesn’t mean we HAVE to share every single thought that we have with the world wide web. What ever happened to compassion?

  19. Yes, some people posted angry messages on the mother’s blog, but she’s taken them all down so we can only see other people’s selections of the worst of them.

    Yes, one group started to plan a vigil at the hospital for some time in the future (they quickly changed their minds), but Dame Rumour has turned that into a Phelpesque demonstration at the funeral.

    The mother herself posted “Now that he is “somewhat” stable, the doctor didn’t want to wait any longer to get it done. There is a risk that comes with having Joshua circumcised. Once the babies are bigger, they run a higher risk of bleeding too much. The longer we wait, the higher the risk of bleeding. So the doctor ordered for it to be done TODAY.”

    Nobody can say that circumcising him caused his death, but we can say with certainty that it couldn’t possibly have helped him to live. (There has been no mention of kidney problems in his case.)

    Intactivists worldwide feel nothing but sadness over Joshua’s death.

  20. I heard about that too. I gave her a piece of my mind that may or may not have included the words “You’re a douche.” Of course it was promptly deleted. Whatever. How could she attack this mother’s choice while she’s grieving. Her son was born with only half a heart and she blames it 100% on a circumcision gone wrong? I wasn’t aware that she was a doctor…….

  21. Gah. How awfu;l all of it, on so mnay levels. I was relieved I got girls and never had to make a circumcision decision – it was something I actually spent time worrying about. The circ room was inside the intermediate care nursery, where I spent weeks upon weeks, and I pumped in there a lot when the other room was taken. I hated the molded bed that is basically a baby shaped indentation to help hold the child down. I don’t know what is the right choice for any child on this issue but if your little one is going to face life threatening illness from having infections because of any serious health condition, shouldn’t the mom get to make the decision she thinks is best, without criticism?

  22. It’s terrible that someone would do anything to try to make that poor mother feel guilty, especially during a time when she is already grieving for her baby. Hateful. I don’t circumcise my boys, but I would never dream of judging someone else for getting their sons circumcised, and as I said, it is just HATEFUL to suggest that the decision to circumcise her son is what killed that mother’s little boy.

  23. I saw a bit of this controversy and stayed out of it because I felt I didn’t know enough to comment. I’m glad you’ve clarified things and given us the proper perspective. I feel horribly for that sweet baby’s parents and hope the drama from this blows over quickly. How tragic.

  24. Mom in Maryland says:

    This makes me so, so sad. That poor Mom. My heart goes out to her.

  25. I wonder sometimes about blogging, twitter etc … especially not having grown up with it, whether it really is a good thing as there are no real legal or moral controls as there are for old fashioned print publications as far as I know. It is wonderful that we all have a voice, and can pretty much say what we please and think in an instant. But in cases like the one you have mentioned many people became involved in something that really was none of their business and would never have reached the ear and eyes of the general public, aside from maybe a small article in a local paper of some sort back in the pre-internet days. And then it would be just facts, no opinions on how/what caused the death. Times have certainly changed that is for sure.
    Lovely picture of you and Charlie, but it was the caption that make me look twice. Two weeks old and the first time you held him. I cannot imagine having had to wait that long, your arms and heart must have been aching for that moment during those long two weeks. What a special and profound moment that must have been for you.

  26. wow… that is terrible. it is so important that everyone who uses the web, the readers and writers, be careful of what they contribute, be it a blog post, an essay, or a comment. think before your push “send.”

  27. I agree with the others, Thanks for posting this. This was truly in poor taste of this writer on this families pain. Also, on the readers. Just because someone says something horrible, doesn’t make it true. If you really need to know research yourself instead of bashing people. Things like that truly hurt me that people are so quick to judge and based on no facts.

    Keep Doing What you do!

  28. Thanks for breaking your own rules. I think if we see an incredible injustice, we have to do something. There is a lot of pain in this world, we do not need to invent more.
    I feel safer in the blog world, knowing that there are just and ethical people in it to defend us. <3

  29. “Before his death, the parents opted to have their child circumcised. A doctor performed the circumcision in a hospital and recovery wasn’t as smooth as they hoped.”

    They wanted him circumcised from the outset. He had had one heart operation 3 days after he was born. They had planned to do it during another operation, but that was called off. He was 7 weeks old. It was a doctor who insisted on circumcising then, saying the risk of bleeding would get worse if they delayed. An hour after the circumcision he hadn’t stopped bleeding, and a doctor applied pressure for two hours. After 6 1/2 hours a urologist found they had nicked an artery, and put a stitch in. He died less than 24 hours after being circumcised. Yes, “not as smooth as they had hoped”.

    We can’t say the circumcision caused his death, but we can say it couldn’t have helped. The doctors insist, and the mother believes them, that the circumcision had nothing to do with his death, but they would say that, wouldn’t they?

    It was hateful of anyone to berate the mother after he had died. The doctors, however, need to be held accountable for agreeing to perform a risky, unnecessary surgery on a sick child.

    • Couldn’t agree more. Let’s focus on the professionals in whom many of us put our trust when making difficult decisions.

  30. I think that this “debate” was so driven by anger because the United States is filled with so many parents (like you admitted) who simply don’t realize how invasive and traumatic foreskin amputation is. In most other parts of the world, doctors wouldn’t think twice about removing this healthy, functioning piece of a baby’s body. There is anger because these doctors KNOW it is not necessary, yet they continue to perform these surgeries because it is an easy profit, and because our culture says it is ok. The intactivists really wanted to SHOUT and make this mother realize that she didn’t need to do this to her fragile baby. They did it because they cared for her son. It may have seemed aggressive, but if you saw a child sitting in the middle of the road alone, wouldn’t you SHOUT as well? Doctors know that circ should only be performed on healthy, stable patients. They are completely to blame for this death. It most definitely was not due to HLHS…although the HLHS may have contributed b/c the heart wasn’t strong enough to take the elevated blood pressure caused by shock and the blood loss (she said the doctor spent hours holding pressure on the bleeding wound.) BTW – a picketing wasn’t arranged for anything. They were going to do a peaceful, prayerful remembrance sitting outside of the hospital, and it was turned into a violent picketing party on twitter. You know I am passionate about this issue. I was one of those parents who almost signed a consent form because I was tired and uninformed, and thought it was something everyone just did. We must stand up and talk about these issues so that we expose that circumcision isn’t just some “little bitty snip of extra skin.” It has a purpose. I applaud you for admitting that you weren’t as informed as you should have been. There are so many families these days who are leaving subsequent children intact. I haven’t stopped thinking about Joshua’s family and I am so angry that the doctors are covering their rears by assuring her that the death wasn’t preventable. I hate that photos were “stolen” without permission. I don’t agree that we shouldn’t have used the story as fuel for our soapbox. When you are fighting against 60 years of pro-circ doctors and tradition, standing on a soapbox is the only way to get the message out. The doctors we trust certainly aren’t going to help get the message out because it takes away their easy profits. More children die from circ than from all of the toy recalls, crib recalls, etc. We never hear that in the newspaper, so it takes stories like Joshuas to expose the truth.

    • Claire! I know you are passionate about this–and it’s an important discussion that we should be having. I just think, from a blogger’s perspective, that Dr. Momma could have handled it differently.

      I completely understand parents wanting to warn her–really, I think that when done tactfully, that’s fine. I have issue with the actions that occurred after Joshua’s death. She could have told the story without providing links to the personal blog. Riling up a crowd of people and then ending them off to a grieving family is a recipe for disaster. Dr. Momma has THOUSANDS of followers–17,000 people like her on Facebook. That’s power. Maybe she’s is OK and comfortable with having her views and thoughts in the public eye to that extent, but I think she needs to be careful and think about what other bloggers want for their space.

      I also think that when that linking resulted in ugly comments being left on someone else’s site, she should have apologized and publicly asked that behavior to stop. By refusing to admit that she created a situation that led to the harassment of a grieving mother, she is condoning that behavior. That I disagree with. We are all allowed to have opinions and feel passionate, and yes, this was a public series of events, but I think it’s important for bloggers to realize the power of their actions and take responsibility for them.

      Love your passion, Claire, keep it up!

  31. Christine says:

    Joshua’s mother claims it’s ok to use his image in positive posts. Spreading awareness about the dangers of circumcision, especially on an infant who already has health conditions, is extremely positive. If he hadn’t been cut he’d still be here to share his story. We should focus on preventing further deaths.

    • I don’t think anyone is qualified to diagnose the cause of Joshua’s death other than those who have had access to his medical chart. The statement that “circumcision killed him” hurts the cause of inactivists. There’s no way you could know that (unless you were one of his care givers), so by saying things that are unfounded, you call into question any other statements you make.

      I also think that while preventing further deaths is important, I believe this could have been handled with tact and respect for a grieving family, would do far more justice to the cause than sensationalizing it.

  32. Sorry, that should say “That would” I’m trying to comment from my phone.

  33. When you post a blog online it is PUBLISHED MATERIAL. This mother published her story. No one stole images or text, she was quoted and credit was given. The end.

    • A quote is a short exert–reprinting large blocks of text is theft whether you give credit or not. Just because you publish something, that doesn’t give anyone else the right to use it.