When I saw Brielle for the first time my heart broke. And at the same time I had peace and suddenly had a strength that I could not explain. I swallowed my pain and gave her my all. David struggled, he struggled with anger, bitterness, and hurt for the rest of the day. We both struggled with heart break. I don’t want anyone to get the idea that we both aren’t haunted by this day.
Yet, surely you have all seen how blessed we were with loving family, friends, and medical staff. We were truly, beyond blessed that day. God was in every moment of that day. As Brielle was put on my chest all I could think was, “Okay. This is it.” And as I looked at her poor little brain I realized what a miracle it was that she was born alive at all.
Brielle had maybe 5-10% of her brain. There really was nothing there. The tissue had not developed well at all. The venous structures were not strong, but instead very fragile. Her brain stem had not even fully formed. Brielle’s heart rate was 60 beats per minute when she was born. That’s less than half of what it should have been. She never took a breath. And yet, she managed to twitch and respond to David and I. She remembered the lullaby I would sing to her. She understood, “I love you.” She was able to grip David’s finger. She was able to cry. She lived far longer than she should have. All of those things are amazing. And David and I feel, were given to us, her ability to say goodbye to us and for us to do the same, was a blessing. She shouldn’t have been able to do all of those things on her own. And she did.
At 34 weeks a component is introduced into amniotic fluid. I’ll spare you the chemistry talk, but in babies with neural tube defects, this component is elevated. It essentially eats the neural tissue. David and I did see a decrease in activity, in cognizance from 34-37 weeks. I told myself she was just tired. I refused to accept that she was lost. We had seen a membrane on the ultrasound, it would protect her. It didn’t. She wasn’t just tired and unresponsive for three weeks. The weekend after my birthday, October 18, I talked about how I felt something inexplicable.
Church had been on everything David and I had been studying and praying. We went down and Brielle was prayed over for healing. I felt a warmth in my belly and a stretching. She began to respond again. She began responding to music, dancing, wiggling. She was back to her happy self. We assumed that healing had begun. Looking back, I think it was more of a gift. And who knows, maybe I’m crazy. But after going through everything, it felt more like a merciful gift. Her whole life felt like that.
It felt as if God was saying, “She won’t survive, but I can give you more time. I can bring her personality back. I can give you the physical strength to carry her and the extra fluid. I can surround you with love. I can let her say goodbye to you.” There’s no denying that there was a sudden change that day. She did improve. I improved. God kept us safe the entire pregnancy.
We survived a near car wreck with a semi, a near plane crash (fire trucks were waiting for us when we landed), and a heart problem that suddenly vanished. I had the physical strength to carry not only her, but obscene amounts of fluid. The most fluid one of the nurses had seen in forty years of nursing.
I don’t know why God didn’t completely heal Brielle and let her live. I don’t doubt that he can. I still believe he can. But I don’t know his reasons. One of the things David and I prayed for was that if she was going to suffer in life to not heal her. I did not want her to struggle or suffer tragedy. I prayed that he would spare her that kind of future. Regardless, David and I don’t know why she died, why he didn’t step in and heal her the way we wanted. But I trust him. That doesn’t mean I don’t get mad or frustrated or struggle with his decision. But I do know, we were blessed through this entire pregnancy. And I’m thankful for all of the good things we were given, even though it hurts.
