On July 29, Congresswoman Beutler posted on her Facebook page that her Potter's baby, Abigail Rose, was born prematurely at 28 weeks and was currently 2 weeks old. Sharing that she was "breathing on her own" and doing "remarkable well". I'm going to assume that nothing has changed because I haven't seen anymore articles about her.
I've been asked by so many people how I feel about this and I can't really say. I'm so torn. On the one hand, I'm so incredibly happy that her daughter is alive! But at what cost? That poor baby will be on dialysis for who-knows how long and I don't think any parent wants to see their child that way, not that we want to watch them die, either. And why was I and many of my Potter's mom friends denied the same treatment? Because we aren't public figures? How are we less deserving of any treatment to save our babies? It clearly isn't personal because ALL of us were denied the treatment, but it's hard to not feel that way! Pardon the language, but what the fuck makes her so special? Her love for her unborn child was no different than mine....or Meghan's or Sarah's or Carrie's or Heather's or Angelle's or Pamela's.
And now, there is officially a Potter's survivor. With something as simple as an amnioinfusion. "Why didn't you have that done to save Tyler?" That's what all of us Potter's moms are dealing with now because this woman posted that her daughter is doing soooooooooo well and everyone and their dog is writing an article about this miraculous healing with amnioinfusion. Most Potter's babies are born between 32 and 36 weeks. Why do you think this woman went into labor at 28 weeks? Don't you think the amnioinfusion had something to do with it? I clearly have no proof of that, but it seems pretty obvious. Funny, there was nothing in the article about it... And no word about a projected surgery date for a kidney transplant. Why? Because the chances of the baby being ready for surgery when a kidney is available are slim. Everything about this story has me frazzled. The fact that MY baby died from this condition and someone else's is living, the "she's doing great" and "she's a miracle baby" tone of all the articles I'm reading, the idea that an amnioinfusion is some brand-new technological advance...that was around 4 years ago but denied to many of us, the way simple minded IDIOTS are using this for their political platform (which, by the way, is absolutely despicable). The comments on these articles are the worst. Must be so nice to stand back with your perfect little life and perfect little children and judge other people. The well-meaning, good-hearted people just make me shake my head. Here is a comment that just burned my ass, "And now the doctors have learned something new from this pregnancy - this is fascinating!" No, doctors didn't learn anything NEW. They finally tried something on a public figure so that this Congresswoman didn't say "Doctors x, y and z all denied me treatment." They can be the only doctor willing to treat this "lost cause" case. Only one part of one article had a bit of truth to it. “I don’t know what the future holds for this little girl,” Bienstock [the doctor who performed the amnioinfusions] said. “We have helped her take the first few steps along a very long road.”
And the Congresswoman had this to say, “Doctors and nurses were prepared for the worst,” she wrote, “but immediately after [Abigail] was born, she drew a breath and cried!” So did Tyler, and although that was its own miracle, it didn't mean that he was any different than any other Potter's baby. He still died because he didn't have any freaking kidneys. The beginning of this article said this, "...her unborn child was suffering a lung-development condition that's typically fatal at birth..." Can you see why this whole thing is driving me batty????? This is not a LUNG-DEVELOPMENT CONDITION! IT IS A KIDNEY CONDITION! By the way, all of these quotes are from the Washington Post website from "The Reliable Source" HA! What a joke.
I want this baby to survive and I want her to thrive. I want her to not have a single memory of being in the NICU with wires and cords sticking out of her body. I want her to be the beginning of a CURE for Potter's. I want her to make history. I'm just really pissed...and really sad...that Tyler came before her. I'm mad that this is so misunderstood. I'm mad that society today thinks it's ok to say the things they've said in regards to this woman and the HELL she is going through right now. I don't have any guilt about Tyler. I did as much as I could without ruining our lives (ie - hounding every doctor in the country until one did what I wanted and draining us financially and emotionally) and I don't think that I could have done more. I carried out God's plan, I know I did, and so did Congresswoman Jamie Herrera Beutler. That doesn't mean I have to like the outcome.
***disclosure*** I'm sure there are a thousand typos in this but I can't go back and reread it right now