At the end of July we meet E for the first time. She had finally gotten pregnant in her mid-thirties and was so excited to start her prenatal journey with us. She came to me for the usual first visit ultrasound. I had a bit of difficulty finding the right place to measure the head, so moved on to the other measurements needed, figuring I would return to it later. It’s a boy! She’s so happy. Baby is moving, heart is beating, about 20 weeks old. I move back to the head, but I can not measure it. The top part of the head is missing. I send pictures to my teacher and she confirms: Baby has anencephaly.

How do you break this type of news to an excited expectant mother? Especially with a language barrier. Is there any right or wrong way to inform someone their baby is going to die? It might make it through birth, but if it does it will likely only live a few hours. And then after giving such news, to start discussing birth plans and next steps. It all seems so harsh and cruel.

But it has to be done. Ate Rona, our Filipino Chief Midwife, comes to translate and assist and together we break the news as gently but concretely as possible. Of course, a second opinion is needed also. E sobs big tears, and we try to reassure her and her companion that we are here to help. Here it’s very common to believe that if something is wrong with your baby it’s your fault, and family members even blame the mother. So we also purposefully speak against this lie and comfort E that this is not because of anything she has or hasn’t done. We don’t know why her little baby boy has developed this way, but it’s not her fault.

After some time processing, we pray with her and speak truths over her and her baby. That her baby is still made by God, and He has a purpose for this little one. We thank God for the time they still have together while begging for peace and comfort over the rough journey ahead. E leaves to see an OB and get a second ultrasound to confirm.

The diagnosis is confirmed. And E is told by multiple doctors that she needs a caesarian at a hospital to deliver her baby. The reasoning seems to be that a journey through the birth canal may injure Baby’s head. But what more damage can be done when there’s no hope of survival anyway? And what about E? What about the injury to her body of major surgery? What about the minutes lost under anesthesia instead of being able to hold her baby? We search everywhere for research supporting the need for a cesarian delivery for anencephaly, but can not find any. So we agree to offer our first-ever palliative birth at Hope Alive Clinic.

We go through all the risks and potential complications with E. But also all the benefits: she will be given maximum time with her baby boy. We will make sure he’s comfortable and not give any traumatic rescue care. She can play music during the process, and have photos taken. E has no desire to go back to the hospital where she was treated roughly and knows Baby will be taken away from her at birth, and is very grateful for the opportunity to birth at Hope Alive. The paperwork is created and signed.

At 33 weeks we get the call, E has gone into early labor, a common occurrence for anencephaly babies. This is actually a relief as it means Baby is smaller and will cause less trauma to E coming through the birth canal. Midwives Rona and Irish are there to birth Baby, and I come in also to give extra support as we provide our first palliative birth. We have our doctor on standby.

E is so strong. So many feelings must be flowing through her, all mixed up and swirling around. Wanting to meet her baby boy, but terrified he will die during the birthing process and not get to hold him while he’s alive. What will he look like, will he still be beautiful missing half his head? Is there a small bit of hope that maybe we all got it wrong, or God performed a miracle, and that he will be born whole? And the pain of labor underlying it all. We pray over her, aloud, inviting Jesus into this moment.

John Benedict was born at 5.49 a.m., on a Sunday morning. A tiny whimper escapes his mouth. As I guided him through the birth canal and up to E’s waiting hands, I knew he was loved beyond measure. His skull was half missing, but that didn’t stop two precious eyes from opening, and tiny fingers from grasping. Wonderfully and fearfully made. As the short cord stops pulsing, it’s cut and baby John makes it fully into his mama’s longing arms, while we attend to the placenta.

There is a little trouble with the placenta, usual for such a pre-term delivery. So I have the immense privilege of taking John for a few moments so E can concentrate on what’s happening with the midwives. It’s the perfect opportunity for some photos of little John while he’s still breathing. His body is already feeling cold, so I put the warming light on him, and try my best to give some cherished memoirs to his family. Then he is taken back to Mama, safely in her arms for his final few hours.

John breaths his last at 8.30. Darkness has come. Yet, E has had three loved-filled hours with her son. Three hours with minimal medical interference and gentle worship music playing in the background. Three hours to tell her boy all she needs to say, and declare her love over him. Three hours for him to be fully known and fully loved, calm and peaceful in his mama’s arms.

We give E and her family time with little John, and then offer to take some more photos. First we wash him. Being preterm and in distress he needed quite a clean, but it wasn’t appropriate to do this completely during his few hours. After his clean, I positioned him for photos for the family to cherish. We took his footprints and gave them to E. Dressed him and wrapped him and took more photos. And took photos for those who wanted one holding him.

Then came the time for little John to be taken to the cemetery. E takes him oh so gently, and places him inside a small plastic container. His head is leaning downwards because of all the blanket wrapping, so we place a small cloth underneath it. Now he looks better. The tears are flowing, E is speaking fast in Tagalog, pouring out her heart to her son, to God. The lid is placed and hearts are broken. E runs into her mother’s arms seeking solace, and then turns to me.

I hold her tight, loving on her, both of us crying. Her sobs coming from deep within. She’s choking out her thanks, in the little words she had, but I understood. It was thanks for being given the gift of holding her boy. For the gift of not needing to face a cold and uncaring hospital environment. For the prayers and love and gentleness. For fighting for her and her child. For not condemning or laying on guilt. For showing the true love and compassion of Jesus. She goes to each of the midwives also, continuing her tears of grief and thankfulness.

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We take a moment to stop and pray before they all leave. A prayer of not understanding why, but simple trust in God. That He ordained every day of John’s life. A prayer of peace and comfort for the family, that they would know God hemming them in behind and before.

And then they are gone. Bundled into a trike, carrying the most precious plastic container I’ve ever known. To a cemetery.

This day was filled with beauty in pain in such a real way. The raw and deep grief overflowed. Yet the heartfelt gratitude did also. The unnerving questions of why something so broken can happen mixed in with the assurance that God is still in control. The loss of a little boy who would never know the normalcies of life, yet also the knowledge that we gave compassion in a real and tangible way as we stepped out of our comfort zone and even further into the mess of this world. Seeing the very visible sign of how our collective sin has caused so much damage to one who has never sinned, and yet knowing that Jesus is enough for this little one also. That He weeps with us. That He stands against this darkness and evil, and yearns to make all things right. That the promise of redemption is real.

John is treasured. By his mama. By his family. By us. But firstly, and most deeply, by His heavenly Father, who now holds him forever in his arms, happy and whole and shalom.

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