Comfort Care Honors Life, Too: Why Sometimes Medical Intervention Is Limited For Premature Babies

because every life matters pic

 

Recently an article was published that ignited outrage in the pro-life community, the baby loss community, and beyond. Twin babies were born alive at 22+ weeks, and medical intervention was not an option offered to them.  As I read the words, and the ensuing comments, my heart ached for the family…and for the medical staff of a very respected hospital. Sufficient Grace Ministries has been honored to work alongside the compassionate team of nurses and physicians at this particular hospital many times. While I do not want to get into the logistics of the article, and I was not part of this story, nor do I know all the details, I do want to clear up some misconceptions about medical intervention in cases of premature infants for the public.

We provide bereavement support and remembrance photography for families facing perinatal loss throughout the state of Ohio and train medical personnel throughout the country on providing support for patients experiencing perinatal loss. It is common practice in the majority of the hospitals we work with that families who experience the birth of a baby prior to 24 weeks (occasionally 23) are not offered medical intervention as an option. For various reasons. One example is the premature rupture of membranes. In those cases, babies are often born alive and live for minutes to a couple hours. It is the policy of most hospitals in Ohio to not attempt life saving measures prior to 24 weeks. Some hospitals may go by weight or other indicators…(500 grams is a weight for some hospitals). A baby may be assessed and an exception may be made. But 24 weeks is the current accepted age for intervention/viability. This may vary slightly. Obviously we all hear those rare cases where intervention is done prior to 24 weeks. And a miracle happened. But many times, these little ones are just too tiny to survive, even with intervention. So they are given to their moms to hold and love on until they pass.

Why would a hospital not offer medical intervention prior to 24 weeks:

  • Many hospitals are not yet equipped to perform life-saving measures on babies under 24 weeks.
  • Although there have been a handful of cases of babies who miraculously survived at 21-23 weeks gestation, it is still very rare. The age of viability is still considered to be 24 weeks.
  • In the majority of the cases, we still do not have the technology to consistently provide life-saving measures for babies born under 24 weeks gestation.
  • Babies born at very early gestations who do survive face many debilitating health issues.

 

According to an article published on the Very Well Family website and reviewed by a physician: “In many hospitals, 24 weeks is the cutoff point for when doctors will use intensive medical intervention to attempt to save the life of a baby born prematurely.” This is accepted throughout the country, not just in the state of Ohio.

We have found this to be the case in our work as well. And, while as bereaved parents and birth professionals, we understand the pain of watching a child born alive but not being able to save the precious little one, we also understand the limitations of medicine.

One of the misconceptions put out into the media frenzy was that the staff was not supportive of life or compassionate because they did not intervene to save the babies. While I understand at first glance, that may seem the case, and I was not present for that family’s situation, nor do I know the details, I do know the hearts of most of the labor and delivery nurses we encounter.

Nurses and doctors, almost universally, are healers. Nurses, especially are wired to be caregivers. Everything in their nature and everything in their training leads them to want to fix what is broken…to heal the sick…to save a life. Everything.

The cases when a mother’s labor cannot be stopped and a baby is born too early to save are incredibly difficult for medical personnel. I have held many nurses in the hallway, who tearfully proclaim, “It is so hard to do nothing. Everything in me wants to rush to save this life.”

Most of the time, families with babies born prior to 24 weeks experience comfort care. Comfort care can still bring great emotional healing when families are offered support and options. Comfort care honors life, too. It is not doing nothing. It is filling whatever time we are given with our babies with love. I have stood beside many mothers and fathers as their babies born from 19-23 weeks have quietly passed in the arms of their parents, surrounded by the love of family. Even in the midst of the broken, there can be great beauty. It is peaceful. Babies do not suffer. They are put directly into their mothers’ arms and loved from this life into eternity. We marvel at their tiny feet and hands, as we create mementos and capture the moments of their brief lives. At Sufficient Grace Ministries, we honor all life and believe wholeheartedly in the sanctity of human life. We view comfort care just as life-honoring as intensive medical intervention…whether a baby is given a life-limiting diagnosis in pregnancy or whether a baby is born too early to save.

In the cases when families who receive a life-limiting condition are given the choice of medical intervention or comfort care…they weigh the options for their family, their baby, their diagnosis. They may pray and agonize over what is best. There are no right or wrong answers for these impossible situations. But, we must be careful about making snap judgments. Both families who choose intervention and families who choose comfort care are honoring the lives of their babies and valuing human life. Medicine does have limitations, and sometimes peaceful, gentle moments with a baby are the best a hospital can offer.

We send our prayers and stand in love and solidarity with all families grieving the loss of their sweet babies…and with the beautiful nurses and physicians who offer their best and many times carry grief in their hearts for the ones that couldn’t be saved.

For support and/or Dreams of You Comfort/Bereavement Resources, visit our website.

The Sacrifice of Servanthood

amanda singing

As I prepare for an upcoming SGM Perinatal Loss Support Training in Nebraska, I’ve been mulling over how to convey the heart of servanthood. How can one explain the incredible beauty of sacrificing yourself for someone else, laying down your own needs to look after aching soul? How can I describe the hearts of the volunteers who enter to stand on the sacred ground where heaven meets earth to walk with a family as they say hello and goodbye to their precious baby? Women who hold a mother’s hands in the wee hours of the morning as she looks into your eyes with the anguish of “why” when there is no earthly answer to her agonizing question.

Last night, while most people were sleeping, SGM volunteers did what only could be described as a Cuddle Cot Tag Team Relay to get our Cuddle Cot back to NW Ohio from the Cleveland/Akron area to serve a family in need. We are currently sharing one for all of our Ohio branches. (For anyone who doesn’t know what that is, it is a piece of medical grade equipment that enables parents to spent more time with their baby who has passed away.) Four drivers, including a spouse and child of one of our NE Ohio Regional Coordinators drove in the middle of the night…each taking a leg of the journey to pass the equipment on to the next…to get the CC to the parents in need, who were over 3 hours away, as another SGM volunteer supported the family and captured images of their time with their baby.

I have no adequate words to describe the type of valor displayed amidst a different kind of battlefield of brokenness. One that’s hard to grasp for those who have not stood in that place. All I know, is the women and men…the families…who serve together on this mission field are the very definition of servanthood. In all their imperfect, grace oozing through the cracks, hands and feet of Jesus as His love pours through them…glory. They are kind of gladiators who not only serve alongside you, they lift you up when you’re too tired to keep going…one on each side…pulling you along…saying…”I’ve got you” with every teary cry lifted toward heaven.

(Last night one of them quite literally found me exhausted and sleeping in the church parking lot where we agreed to meet for me to drive my leg of the CC journey…and said, “Get in my car. I’m driving you.”)

If you see any of them…of us…and we are scattered and distracted, disheveled and forgetful, tender and emotional, if we never call anymore…please know there is a reason for our brokenness and embrace the beauty found there buried under what appears to be weakness. If we cancel at the last minute, miss out on events, can’t man the concessions, know we are doing something few are willing to do…something hard to imagine for most…but so very essential to the people who are saying goodbye to their children. Please give grace to those who have chosen to serve as we stumble to the golf match without sleep or get our child’s physical at the last moment…or can’t pick him up because the hospital called…because everything stops when that happens.

For those wanting to embark on this journey, I want to ask the question, are you ready? Have you counted the cost…because, there is a price to serving others. Is your heart fully called to enter in with those suffering through unimaginable grief….grief  you can’t carry or mend with your human hands or the  best intentions of your human heart? So much more than good intentions, or even the desire to build a legacy for your own children in heaven, will be needed for you to leave your bed at 2am, to leave her debut in the dance recital, his solo, her soccer tournament, his golf match…when the call comes. While it will bless you, because we are always blessed and filled in the pouring out when done with the heart to serve, it can’t be about you. It must always be about loving the one in front of you. Because love lays it all down.

Humbled and grateful that there are those willing to answer this call to serve others. And, grateful to stand with families on the sacred ground where heaven meets earth. Again and again.

As a side note, SGM is currently sharing one Cuddle Cot, generously donated by Owen’s Gift in memory of Owen Plunket. We need more Cuddle Cots so that all of our branches have this much-needed piece of equipment to give parents the gift of more time with their baby whose life was brief.  Another amazing SGM family, baby Gavreel’s family, is planning to host a garage sale this month to raise money for a second Cuddle Cot and Moses baskets (valued at about $3,500), so that more families can receive this amazing resource. If you are local, please stop by or donate toward their sale. You can also donate from anywhere using SGM’s donate button on our support page (please specify that you would like the donation to go toward the Cuddle Cot.) We have many other needs listed there as well.  SGM needs three new laptops with DVD/CD burner  and SD card reading capability, high quality to handle many files and to edit photos. And, a whole ongoing list of items.

Live from (Corning), New York

I stepped off the plane, and noticed the hills, a contrast to the flatlands and cornfields back home. I thought it must be one of the most beautiful places on earth in the autumn, when the leaves on the trees peppering the hills are full of color. I was greeted at the airport by three adorable children and their daddy. Faces I’ve come to know through my computer screen. The beautiful family of my dear friend from One September Day, September McCarthy.

I checked into my hotel room, which would become a bliss filled retreat of solitude and prayers, and whispered worship from my heart…and naps, and bubble baths, and a place to sleep away the migraines that have recently plagued most of my days like a true thorn in the flesh. I met new sisters in Christ, who truly felt like sisters as we told our stories under the glittery snow fall, while live music wafted through the air. I felt so many Daddy’s little girl moments from our heavenly Father. You know the times when He sends gifts straight from heaven…and just for you.

It was nourishing and refreshing and lovely. Every moment.

When September first asked me to come to the Raising Generations Today Conference, I was so honored and excited, and just utterly in awe of the grace of our God and His great faithfulness. Years ago (in 2009 to be exact), September emailed me to share her story. That was our first conversation. I lost twin daughters and a son. She lost twin sons, and a daughter. (She experienced other losses as well.) We were both touched by twin to twin transfusion syndrome and Potter’s Syndrome. And, we were both women of faith, clinging to our God, and new to the wonderful world of words and inspiration and sisterhood of blogging. It was a whole new world for us, and my heart was immediately knit to hers and many others. (Even if she is a Steelers fan.)

I have felt so loved and cared for and lifted up this weekend. I hope that my tiny offering was at least some small encouragement to someone else, because I certainly have been encouraged by the gathering together of women this weekend. Real women, who love Jesus and love their families. This amazing conference began by September inviting women into her living room to walk alongside one another through the joys and trials of motherhood, offering hope and encouragement for every face and season of mothering. She is a woman walking the walk. And, God did a mighty thing. He sent sponsors and he sent enough women to sell out the tickets.

At Sufficient Grace, we understand the same simple treasure and desperate need to just walk alongside a woman in the midst of her brokenness. To love her and speak truth and grace…or just to sit beside her in the grief for awhile, in a safe place. A harbor from the stormy world. There is power…and healing in the willingness to enter in and tell the stories…and swim awhile with someone flailing in the dark, deep ocean of grief.

I am in love with the concept of Raising Generations Today. And, so honored to have been included in this beautiful gathering.

I met some amazing new friends…writers, speakers, mothers, lovers of Jesus. Real women.

When it came time for me to present my workshop, a few beautiful faces trickled in. There were maybe 10 of us in the room during the workshop. I am used to small groups, but I wasn’t sure what to expect. About 300 women were at this conference. Statistics say 25% of them have lost a child, but the baby loss topic is hard. And, if you’ve lost a child, it takes so much courage to willingly open that wound. I was grateful for the women who were courageous enough to step into my workshop and swim together in the sea of grief for awhile.

Afterward, most of the group followed me upstairs for a Heart to Heart session so they could share their stories with me, and each other. I hoped the tiny offering was some comfort. It never feels like enough to me. And, after, I struggled a bit…as I always do when finished speaking. Overanalyzing, wrestling with spiritual battles and my own flaws, second guessing.

I was wondering if September would be disappointed in my small turnout. She later shared with me some beautiful observations from the mothers who attended my workshop. Words that refuted the lie that numbers matter. Because to God, one heart…one soul…is worth everything. Worth giving His only Son in exchange for the salvation of that wounded soul. And, I remembered the truth. That my offering may be small. I may be small and so not famous, but God has shown me that there is immeasurable value in offering a safe place to tell the stories of brokenness and healing…to say the names the world seems to have forgotten…to honor brief lives…to hug mothers whose hearts carry a heaviness so deeply ingrained in their weary depths. To be allowed the privilege of serving as that willing vessel….well, there aren’t words for that.

God doesn’t care about quantity. He is much more interested in quality. He’s the kind of God that will leave the 99 to chase after the one broken soul.

My favorite part of the entire conference came from a beautiful woman featured on the Mom panel, named Traci, who oozes joy despite the brokenness she once came from. She oozes joy because she has been rescued and restored. When asked what she would say to another woman, walking in a place of brokenness, she confidently and boldly proclaimed truth that rang in deepest part of my woman soul:

“I don’t care who you’ve been or who you think you’ve been, you are intensely loved by Jesus.” ~ Traci Veek

What more needs to said than that?

 

Birthing Miracles

I stayed as far away from birthing rooms as possible after experiencing four traumatic labors that resulted in five births. I was the queen of the cascade of medical interventions phenomenon spoken of in the doula realm. Pitocin and other labor inducing interventions. Check. Epidurals. Check. IV’s. Check. Forceps. Check. Long, stalling labors with ineffective contractions. Check. And, don’t even get me started on my track record. Three of my five children were born alive. Two remain alive. Two left this earth before leaving my womb.

The celebration of the miracle of life experienced in pregnancy long ago lost it’s luster for me. So, I find it rather intriguing that my heart has awakened to the love of all things birth related, some sort of redemptive path I never would have chosen or orchestrated in my limited human imagination. God loves to restore broken things. To send us into unlikely territory, stripping us of the heavy, muddy cloak holding us back, and clothing us with a new garment.

My friend, Heidi Faith, from stillbirthday.com speaks of the miracle of birth…saying simply, “All babies are born.”

I love that. And, I’ve found it to be true. I have spoken of the miracle that occurs when we enter in to walk with a laboring mother, most of the time, one expecting a child whose life will be brief, or whose life on this earth has already ended, beginning anew in heaven. It is a sacred ground, the place where heaven meets earth, and Jesus bends near to carry the wee one home as He brushes past, comforting the mother. Sometimes, he allows my arms to be felt as His, wrapping around her. Comforting her with His comfort, dressing her baby in the most beautiful hand-made garments. Through me, through us. What a humbling honor to be allowed to serve as a vessel of His love. He is ever close in the birthing room. Whether a baby lets out life’s victorious cry or takes his first breath in heaven, He is ever close. So close, we could reach out and touch the hem of His garment. So close, miracles still happen…even when a baby lies sleeping in her mother’s arms. Even when goodbye follows hello.

Because every life matters. Every life is worth celebrating, welcoming. loving, honoring, and grieving.

And, because birth is always a miracle, a powerful, divinely-bestowed gift, offered to women.

Eve, the first woman….her name means life. She is known as the mother of all living. God gave her that gift, that powerful, mighty, beautiful gift…to be the bearer of life. This world is all sorts of broken, from the moment of the fall in the garden. But, the gift remains…precious.

I’ve been reflecting on the beauty God means to weave through our lives, the purposes He has for the gifts he gives to us. Women often feel devalued and left longing for something more. We miss the gifts in front of us. We long to be empowered, significant, accepted. And, yet, what greater power (the good kind) has God given…what greater honor than to be a vessel through which life is birthed? The power to conceive and give birth should not be overlooked. I am not just speaking of the ability to birth a live, healthy baby. Not all of us have been blessed with that gift. However, the ability to birth life…to encourage and enliven this world, that treasure lies in the hearts of all women.

“God gave the woman an ability not just to have babies but also to release life in a variety of expressions. In fact, one translation says that Eve means ‘to enliven’. ” ~ This Day We Fight, by Francis Frangipane

“Women excel in intercession, in spiritual sensitivity and the release of new beginnings…To possess a national awakening, the ‘birthing’ power God has placed in women must be released.”

“You have been created by the almighty to birth breakthroughs on planet earth! God has designed you with a latent ability to release life through your intercession…Through their intercession, these godly women will prayer-birth powerful ministries on earth, of both male and female.”

“Revelation 12:1 speaks of a ‘woman clothed with the sun.’ This word is not just talking about Israel or the Church. It also reveals how God sees spiritual women: They are honored and crowned with distinction; pure and clothed with the glory of God. With confidence, they tread upon the powers of night. Dear army of praying women, it is your inherent destiny to birth that which will rule the nations.”

From chapter 13 of the book ~ This Day We Fight, by Francis Frangipane

The above book has inspired me, as a woman, not to overlook the incredible, divine gift of bearing life…whether it be in delivering a baby, or whether it be in encouraging another or going to battle in prayer for another soul. Women are treasured in the sight of our God, and we are not ever insignificant or overlooked in His eyes. He has entrusted us with a power great and mighty, a gift to be honored and cherished.

Be blessed today, beautiful woman of God, and be a bearer of life…in whatever capacity you have been called to enliven this earth, birthing breakthroughs through prayer, melting brokenness with love, covering the wrongs with grace.