On Monday, pro-life Republican Congresswoman Jamie Herrera Beutler, who announced the coming of her first child last month, shared the following tragic update:
A few weeks ago Daniel and I excitedly announced that we are expecting our first baby later this fall. This post is to let you know about a sharp turn our journey has taken.
At a recent, routine ultrasound appointment we received the difficult news that our baby has a serious medical condition called Potter’s Syndrome. Potter’s Syndrome (or Potter’s Sequence) is abnormally low amniotic fluid caused by impaired kidney function which inhibits normal lung development and is often fatal. We have had a second opinion and the medical diagnosis was consistent with the initial news: there is no medical solution available to us. We are praying for a miracle.
We don’t know what the future holds for our family, but we ask for your prayers and appreciate the privacy a family needs in such circumstances. According to the medical information and advice we’ve received, I will be able to continue to balance the responsibilities of an expectant mother with serving as your representative in Congress.
Potter’s Syndrome is among the most terrible possibilities expecting parents can face – “This is a very serious condition, usually deadly. The short-term outcome depends on the severity of lung involvement. Long-term outcome depends on the severity of kidney involvement.”
Even so, many parents face it yet choose life, and they have heartbreaking stories to share. Whether their children lived for a handful of minutes or a few weeks past birth, they wouldn’t have traded the bond formed by trusting God and loving their children for anything:
Jody’s story:
As mad and sad as I have found myself, I want to thank you Jody. I want to thank you from the bottom of my heart. In spite of the fact that every doctor we saw told us you would most likely not survive delivery, you fought. You fought to make it into our arms on that rainy night. With each passing minute you fought to stay with us. As the time moved along, you fought like I have never seen before. You put everything and I mean everything into that fight, until you had exhausted the last ounce of fight you had within, and then you sprouted your wings.
Mommy and I have learned so much from you my son… We have learned to be a stronger couple, even better parents, more caring friends. We have learned to put things into perspective. We have learned that things that we thought were so important to us, really are not that important after all. We have learned that family is more than just a word. Time is not infinite, and it must be treasured. We are given gifts, gifts that must be cherished, because as quickly as we are given those gifts, they can be taken away. To live for today because tomorrow is not guaranteed. Not to dwell on what you don’t have, but to cherish what you do. Never to part without telling the ones you love what they mean to you.
Gabriel’s story:
We held him one last time, gave him one last kiss, and said our good-byes. Leaving him there, in the room, was the hardest thing I’ve ever had to do. That night, as I walked outside, I noticed one single glistening star in the sky – it was the only one for 10 minutes and was shining SO bright. I knew it was a message from our Gabriel, showing us a litltle glimpse of heaven.
I think about him every moment of every day. He is in my every thought, my every movement. I will always wonder what he would be like, what he would look like, what all his favorites would be… No parent should ever have to bury their child, whether its a baby, a child, a teenager or an adult. It goes against the grain of life. Having to say good-bye so soon really makes you realize how valuable each moment is, you no longer take a single moment for granted and live each day to its fullest.
And as Emily’s story reveals, the possibility of miracles can’t be completely discounted, even when your own physician is urging you to do exactly that:
The doctor was negative the entire time, constantly suggesting abortion (what he called ‘termination’) and telling me of others in my situation that had abortions. I asked him what he would do in my situation, and he said he would terminate. I asked about surgery, and he said the bladder was too large for him to even consider it. I asked about early delivery, and he said that it was a possibility but that if I were to do it doctors would not prepare to help my baby […]
They were wrong. She was born 5 weeks early at five pounds. When I had her, I looked down and heard her cry. I remember asking myself, “is this supposed to happen?” (I had never seen a baby die). She was alive! I tried to watch through her team of doctors. They even let me hold her for a quick picture. We were in the NICU for three weeks.
She does have many medical issues, but her lungs are normal. Her kidneys have some issues but should not need replaced. Her feet are not clubbed, she is not mentally retarded, and there is no longer fluid in her abdomen or around her heart. Her medical problems are mostly related to her large bladder and prune belly syndrome (a lack of abdominal muscles) but are not life threatening. She has had one surgery to help prevent bladder infections She is eight months old and very happy. She can sit up on her own and roll over. She is amazing, and I am so glad that I had her.
Rep. Beutler and her husband have shown tremendous grace and strength in the face of a nightmare no family should ever have to consider. They understand that the dignity and value of life don’t hinge on health, longevity, or desirability, that all children are a gift from God and as such deserve love for their own sake, their very presence in our lives, however fleeting, offering priceless insights. They deserve our support, our prayers, and our commendation.
