God’s Comfort in the Heartbreak of Anencephaly

This was it, exactly what my heart had secretly desired. I was pregnant! We had just received the results of our genetic testing to find out the gender. I had been quietly praying and wishing for a baby girl. One that I could put big headbands on and all things pink. This baby was a surprise, one I didn’t think I’d have. Just six months prior, we decided that if we adopted a sibling group of four we had cared for in the past the dream of having another biological baby would need to be sacrificed. Having the four come back would mean that we would be at 12 children, and that was a big number for us. I prayed about it and honestly even argued with God. I wanted a little baby girl so badly, but God clearly said we were called to these kiddos.

I remember sitting in the car when I received the email with the results of the testing. I read them and called my husband crying tears of joy. I was getting my baby girl, and all the testing was great! I cannot express how excited I was and how special I felt that God was doing this small request for me. I was humbled and so incredibly thankful.

Discovering Something Wasn’t Right

I missed my 20-week ultrasound for a family vacation, so I scheduled one at 22 weeks. It all seemed pretty normal; she had long legs, her heart was beating perfectly, and she was moving around. Then the technician got to her head, and she became very silent, not telling me anything. It was a little unnerving.

I left, called my midwife’s office, and asked if they could call and make sure everything was OK. The midwife’s office assured me that it was probably nothing and that sometimes the techs may just be having a bad day. They said they would look into it and let me know if anything was wrong. It wasn’t even 10 minutes later that the midwife called back and said, “Faythe, you need to see our overseeing OB first thing tomorrow morning. Something is definitely not right.” She gave me the OB’s cell phone number, and at this point, I realized this probably wasn’t good.

I called the OB, and he said he wanted to see me first thing in the morning. He told me the baby’s head was measuring small and said he would probably refer me to Maternal Fetal Medicine for an evaluation. My husband had a full week of meetings, so I told him not to reschedule because I was only going in for a referral. I didn’t sleep much that night; Google and WebMD are not your friends in these situations!

Hearing the Initial Diagnosis of Anencephaly

I went to the appointment, and the doctor was lacking in bedside manner. He wanted to do his own ultrasound, and he started scanning and said she looked good. Then he arrived at the head and just said, “Oh.” I figured that probably wasn’t good, and maybe Mia would have a defect or a smaller head than normal. I don’t think I was prepared for his diagnosis, anencephaly. I was only familiar with the term because my friend’s sister had delivered a baby with that same diagnosis a year and a half earlier, and he had died. I asked him what that meant, and he simply replied, “Well, she’s not viable; Maternal Fetal Medicine will go over your options with you.”

And just like that, this doctor delivered news that shattered my dream. The doctor provided me with a pamphlet as I left. Little did I know at the time, but I would soon have enough pamphlets to cover a whole wall! Each of them covers all the things that no parent wants ever to have to face or deal with. I soon had funeral home information, organ donation, hospice for kids’ pamphlets, and brochures on jewelry that could hold your child’s ashes. This was not my dream; this was all too much. I went from counting down the days til I could meet Mia to desperately clinging to every kick and movement.

And just like that, this doctor delivered news that shattered my dream.

My husband and I went to God’s word, and everywhere we looked, we found that the best response to hard things was faith in who God is and trusting him. We believed that God was completely capable of healing Mia. We knew that she would be healed and whole one way or another, but we asked for her healing to happen this side of heaven.

Know therefore that the LORD your God is God, the faithful God who keeps covenant and steadfast love with those who love him and keep his commandments to a thousand generations. Deuteronomy 7:9

Dealing With Sadness and Fear
Find encouragement in faith, here!

The specialist’s appointment was particularly disheartening and offered no hope. They said that Mia was “a fluke,” that we had five biological kids who were fine, and this was just a rare thing, and they were so sorry. I think having someone call your blessing a fluke, a mistake, or say she’s not viable were some of the hardest things to hear. We loved Mia. She was an answer to my heart’s desire. Our kids were so incredibly excited about us having a baby. Rather than planning a baby shower, we were told to work on planning her funeral. This just wasn’t how it was supposed to be.

At first, we really limited who we shared the diagnosis with; we just prayed for healing. We grew up in a strong faith community. It was amazing and helped shape so much of who we are today. But, growing up, there were many instances when bad things happened to people, and they were looked at as if it was somehow their fault or that their lack of faith was what caused things not to go “the right way.” So, after receiving the diagnosis, we were hesitant to tell anyone for fear of the judgment it might cause over our perceived beliefs or life choices.

The size of our family was one particular life choice about which we often received comments. When we announced our pregnancy with Mia, there were some unkind comments. She was number 13 in our family. I remember one comment in particular, “Better hope it’s twins ’cause 13 isn’t the luckiest number.” Then, after the diagnosis, I kept thinking back to that silly comment. Was this somehow my fault? Should I have quit while I was ahead?

There was one person I called the minute the OB told me he needed to see me, a pastor who has been in our lives for years. He’s been so much more than a pastor; he’s been like another parent. He gave some of the best advice, and I think it’s the most solid advice when facing any crisis or hard time. He told us to seek God and decide what we believed God for and what we had the faith to stand on.

Guarding Our Hearts and Minds

So, Ryan and I took time as a couple to pray, seek God, and settle our hearts and minds. Our emotions were drained, and our hearts hurt. There was fear to be worked through and so many decisions. We had to get a picture of what we wanted through this, and we did that by asking God what we could learn.

God was so faithful; he calmed us and showed us so much. That was crucial to being settled before Mia’s arrival.

Read another story of handling grief here.

One of the first things that God reminded us of was that he was good. He was good, and we could trust him. It’s funny how you can be reminded of hopeless areas of your life from the past, and yet somehow, God came through. So, we purposed in our hearts to focus on all that God had already done.

We also reminded ourselves that Mia would be healed and God’s word is true. God would heal her either on this side of heaven or on the other.

We started praying that no matter the outcome, God would be glorified.

Once the truth that Mia would be healed was settled in our hearts, we focused on how we wanted to walk out the journey. What we wanted most of all was, at the end of this, to be still able as a family to say, “We love You, God, we trust You, and You are good.”

We prayed that our kiddos would know the love of God at new levels because of this journey.

We prayed that nothing would be wasted. I think that is one of the most amazing things about God, that he will never allow any of our pain, suffering, hardships, or difficulties to go to waste. He will really do what his word says in Romans 8:28, “And we know that for those who love God, all things work together for good, for those who are called according to his purpose.”

There was something else that was extremely important to us, and it was guarding our hearts against unmet expectations and selfishness. As the time of Mia’s birth approached, and there was still no change to her head, the reality of what we would face, short of a miracle, was impending. We knew that we needed to protect our hearts by not placing expectations on others. Expectations are such a tricky thing because if unmet, they can lead you into a place of hurt, anger, and disappointment. So much so that it can truly affect how you treat those around you. We didn’t want to become so self-focused that we would not be able to encourage those around us who were walking this path with us.

How We Experienced God in the Journey

Leading up to Mia’s birth, there were so many amazing things that happened. We shared with many about what was happening in our lives and found support in places we never imagined. There were some very special moments and so much goodness in the midst of the difficulty.

One of those was that my friend (who was my midwife with three of my kiddos) called and offered to fly down for the delivery. The day she called, I was having a tough day—one where I was just not sure how I would get through Mia’s delivery. I was struggling with knowing that if there wasn’t a miracle, I was literally going to deliver my baby to die. I was dreading a hospital with a doctor I didn’t know well, and then this sweet friend offered to come. Lucy has seen me at my best and worst; to have her there was so incredibly reassuring.

Mia Grace was born on January 31, 2019. There were so many amazing things about her birth. Just the fact that she was born alive was a miracle in and of itself. I remember when I saw Mia’s head and realized that my prayer for her healing on this side hadn’t been granted. In that moment, we had a choice to make—would we choose to be grateful or to allow disappointment to rob us of the time we had?

Many babies with this diagnosis don’t even make it to delivery. But after an induction and two days of labor, Mia was born at 12:41 pm. We were able to have the kids close by so that if she was born alive, they could meet her. The kids were able to love on her and cuddle her.

A friend came to the hospital to take beautiful pictures of us.

We had several of the most amazing nurses. One in particular helped us so much that day. She helped us dress Mia, took pictures, made imprints, and anything else we needed. She cried with us when Mia went to heaven. Friends arranged meal trains. Our church gathered around us to help with all the arrangements. Some of these people were complete strangers.

I think one of the biggest lessons in this journey was being willing to be honest, raw, and vulnerable with people. It is OK to not be OK. God can handle it.

Before I became pregnant with Mia, God had already arranged for me to meet my friend, Jenna, whose sister had a baby with anencephaly. I remember when Jenna shared the prayer request for her sister, Mia, and her baby, James. I remember leaving Bible study that day and crying. I could not imagine any mother having to go through that and then being OK again. I cried many times, praying for Jenna’s sister. Yet, when I was faced with the same situation later on, God had already put someone in place to be there for me who could pray with me, remind me that it would be OK, and tell me I would make it through.

I think one of the biggest lessons in this journey was being willing to be honest, raw, and vulnerable with people. It is OK to not be OK.

How God Is Healing Our Hearts

The most amazing gift in all of this happened 11 weeks after Mia’s birth. We received a call from the Department of Children and Families telling us that the biological mom of the sibling group we were adopting had given birth to another baby. They asked if we were willing to take her! She was released from the hospital to us on Good Friday. My understanding of God’s redemptive grace was taken to a new level.

Eleven weeks prior, I had left the same hospital without a baby and returned home to get 12 kids ready for their sister’s funeral. I never could have in a million years imagined that I would be leaving that very same hospital with a baby.

Please hear my heart; there is never a replacement for a lost child. There is, however, great healing when your arms are no longer empty. This little lady has helped with our healing as a family more than anything else could have.

God is faithful. I can sit on the other side of this journey, which so often felt like hell on earth, and say God is so good. He can be trusted. I’m not sure what you are facing today, but I do know that if you commit whatever it is to him, he can make something beautiful from it. He won’t just help you survive; he will cause you to thrive in the midst of disappointment and heartache.

Psalms 34:18, “The Lord is near to the brokenhearted and saves the crushed in spirit.”

For more encouragement and related articles, start here:

Love Not Lost: Giving the Best Gift to Grieving Families
TobyMac’s Son’s Cause of Death Reminds Us That Faith Doesn’t Protect Us From Pain
You Are Loved More Than You Know

True Beauty is Found in a Woman’s Strength
What Your Grieving Friend Really Wants You to Know

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