May the road rise up to meet you. May the wind always be at your back.
May the sun shine warm upon your face, and rains fall soft upon your fields.
And until we meet again, May God hold you in the palm of His hand.
-Irish Blessing

Tuesday, July 30, 2013

Change is Painful

Today I read the beginning of an unfinished story which reminded me that change is painful but worthwhile.  Congresswoman Jaime Herrera Beutler delivered a baby girl, Abigail, a few weeks ago.  Her daughter is a very special little girl.  A very special little girl born with Potter's Syndrome who is still alive.  Herrera Beutler received amnioinfusion treatments weekly for five weeks and Abigail has been receiving specialized dialysis treatments.  She was born at 28 weeks but doctors say she has fully developed and functioning lungs most likely due to the amnioinfusion treatments.  Her story remains unfinished but it brings hope and pain to those of us who have been touched by Potter's.

My initial reaction was a gut wringing ache as I thought of my own sons and my questions while pregnant.  Then I thought of all of the doctors who have told us this was not possible and the hours upon hours of research I did on my own.  I appreciate that Herrera Beutler frankly admits that many doctors told her survival of her baby was not possible.  But the pain comes in that she had medical treatment and connections available to her, likely in part because of her political position (but this is strictly assumptive), that were not available to me.  I sought that same treatment for Eli but because the medical professionals I saw had no proof of it working they were either unwilling or uninterested in finding someone who would try.  Without that help, as I am sure any other "regular" person can relate, it is extremely difficult if not impossible to find that extra level of medical care and treatment.  So this story is a double edged sword to me.  It is amazingly hopeful to hear of Abigail's survival and I pray she is the first of many Potter's babies.  But at the same time it is woefully sad to realize that perhaps had more medical professionals been willing to explore this avenue of treatment that Abigail would only be one of many to have survived Potter's to this point.

This is all speculative I realize.  I don't know how Abigail's story will end and I don't know how her story will impact others.  What I do know is that change is painful but necessary.   Without bravery, hope, persistence and enormous amounts of fortitude in the face of failure, change cannot be realized.  Herrera Beutler's family, Abigail included, have already accomplished more change than they may ever realize.  I pray that this change extends far beyond medical journal articles to the lower tiers of medicine where it is desperately needed - to Potter's families.

I am missing my sons more than ever today.


  1. Oh my. I don't even know what to say. I'm incredibly happy for Abigail and her family. But I know how painful it is to read stories like this. And my heart hurts for you and your precious boys.

    I think there is a lot more given to people with higher stature, like in this case. It seems that all the miracle treatments are so hushed or so incredibly expensive that no one else really has a chance. :-(

  2. The news hit me in the gut. Although happy for the family, it made me angry, feeling selfish, and I cried just as hard as when I said goodbye to each of my babies. Bittersweet news. I begged Sacred Heart Hospital to do the same treatment with Grace. I told them that I would be willing to try any experimental treatment. I was told that they had tried this type of infusion before to only end up with infection or miscarriage. When I saw pictures of her with her baby, I didn't feel happy for them, but jealousy filled my spirit. I thought of you, Mandy, after a few days to process this news and wondered how you felt about this miracle. I really am extremely happy for them but I can't get passed feeling angry for all the other babies they just completely gave up on. I am excited that this could be a potential life saver as I worry my children may suffer having a Potters child and that thought haunts me. Hugs to you Mandy and I hope you and your girls are doing well.

    1. I thought of you too, Valerie. I completely get where you're coming from. I am glad that someone listened to that family and that maybe something good can come out of this for all of us. I pray that is the case because you're right, it hurts like hell right now. I too asked anyone who would listen for that same kind of help and was told similar things to what you were told.

      I've thought of you often lately, I hope you and your family are doing well, it never gets "easier", does it?

  3. I lost my baby 3 weeks ago on July 14,2013 due to potters sybdrome. I felt so angry and betrayed when I learned Abigail was born a day after my angel was born. My Josiah was born sleeping at 33 weeks. I never got to hear him cry or see him move. I was in a state of numbness even threw out the funeral services. These past 3 weeks have been so hard. I'm happy I found your blog.

    1. Emmaly,

      I am so sorry that you found my blog under these circumstances. I can't imagine how angry I would feel had I just lost my baby - it hurts bad enough with my losses farther out. I am sorry for your loss of Josiah, I looovvveee his name, it is beautiful. There is nothing easy about death and there is no right/wrong decision. We all just kind of stumble through it the best we can. Please hang in there, it does get better with time and you are going through some of the worst times now.

  4. This is the first that I have heard of baby Abagail. I actually hear Potter's Syndrome for the first time today to, even though it perfectly describes my Michael, who was born without kidneys 11 years ago. Reading about this today makes me so sad. I remember asking the doctors if they could inject fluid, and they told me no. I asked the doctors if they could put my son on dialysis, they told me no. My son cried when he was born, the most beautiful sound I have ever heard. He was born at 32 weeks, by emergency c-section because he was crushing his umbilical cord. He lived for 4 hours and died in my arms. To this day, when I think of him I still cry. His birthday is next week, and I have a hard time dealing with it. Thank you for your blog. Even though I am so sad for what you have gone through, I am glad I am not alone.

  5. Happy upcoming Birthday to your Michael, he is not much older than my Wyatt.



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