A breakthrough for Potter’s babies

I remember reading when Representative Jaime Herrera Beutler was told that her baby had a fatal diagnosis of Potter’s Syndrome and that her and her husband decided to carry to term. I was so glad that someone in the public eye had made that choice so that others can see that it is a valid option and that terminating is not the only choice despite what doctors may tell their patients.

An article was recently published that shared more about her baby’s birth and life. Her baby was born alive and breathing. She has been doing well for 2 weeks now. During her pregnancy, several amnioinfusion procedures were performed to allow for lung development. Since her baby’s birth, she has been receiving dialysis for her lack of kidneys.

This is great news for families who are expecting a baby with Potter’s Syndrome because they know that there is hope for their baby to live when before doctors gave them no hope.

On the other hand, this news is quite the blow to families who have already had a baby with Potter’s Syndrome. This blow is especially hard for families who asked for the very same things (amnioinfusion and dialysis) and were told no. They were told that it would not help their baby and their baby would not survive even if these procedures were performed. Now it is proven that with these treatments, babies with Potter’s Syndrome can survive. It is a very hard pill to swallow and my heart goes out to all the families, including my friends, who have had to deal with some very tough emotions and grief with this news.

To Jaime and her husband, congratulations on the birth of your little girl. She really is a miracle. I hope that from her story she will be an example to other doctors out there that these treatments do work. I hope that more doctors will be willing to try them and save babies with Potter’s Syndrome. I pray that she continues to do well and that eventually she gets the kidney transplant she needs.

To my friends and Potter’s families, I’m so sorry that you were not given the chance to even try to save your very loved and much wanted babies. It isn’t right and it’s ok to be angry and to grieve over this news. I know how I would feel if it were my Carleigh and I would feel devastated to know that I could have done something but was prevented in doing it. My prayers go out to you.

The bittersweet

A couple weeks ago for about a week things were tough. I was having lots of moments that left me teary-eyed and aching for my little girl. I can’t pinpoint any single thing that brought this on. I guess it’s just one of those waves of grief that come. Although they are not as frequent now, I am not expecting them as much so when they hit it can be hard.

Truth is, I miss my girl. I was especially missing her that week. I felt the ache in my heart. I have been wanting to come here and write. I wanted to come that week and pour out my heart but I just never had the time like I wanted to do that. And that’s ok. I have 3 little girls who needed me and that’s where I’d rather have my attention. I knew I’d get here eventually. (Of course now that I’m feeling better I don’t feel the need to pour out my heart like I did.)

They make the ache easier-seeing their smiles and hearing their laughter. Playing and hugging and loving them helps me. I do believe a part of her lives on in them, especially my Evanee who looks so much like her.

I snapped a photo of Evanee with Carleigh Bear while she slept. It is bittersweet to me in more way than one. A little girl who hugs a bear where her sister should be, except this little girl would not be here today if her sister was.  So thankful for both of them-for all my girls.