November 29th marked our baby girl’s 2nd birthday in Heaven…
Two years… I can’t believe it’s been two years since the best and worst day of my life. I gave birth to our first child, our daughter Brooklyn… But she also died in my arms…
We got to meet the baby I had been growing in my belly, the tiny human being we made, the little girl that started our family… And in the blink of an eye, she was torn right from our lives. We experienced the deepest and purest form of love, the love of a mother and of a father… And had that ripped right from our hearts. A piece of us had suddenly left this world and we were left scrambling trying to pick up the pieces. It was a day that shattered every bit of who I was and changed the trajectory of my life forever…
I wish I could say that the pain has gotten easier… But it hasn’t… We’ve just learned to live with it. And although we will live with the pain of losing our daughter forever… We have learned ways to honor her. She will always be a part of our lives. And we will continue to take her with us wherever we go. We will say her name, and try to bring awareness to the reality of pregnancy and infant loss. A topic that I think many people either do not know about or do not talk about.
Did you know that viability is not the same across the United States? Viability — A word I hated, but a word I later clung to in my second pregnancy… A viable pregnancy is one in which the baby can be born and have a reasonable chance of survival.
But the gestational age of viability varies at each hospital. In many hospitals, 24 weeks is considered the cutoff point for when doctors will use life saving measures for a baby born prematurely.
So what did that mean for our family and our daughter? It meant that even though I was more than half way through my pregnancy, that if she was born before she reached a certain gestation, there was nothing they could or would do to save her…
Really let that sink in as a parent… What if your body was the only thing keeping your child alive? And what if doctors told you they couldn’t save your baby? It was torture… absolute torture… and it still is…
Our whole world was turned upside down Thanksgiving morning 2016… What started as a normal morning quickly turned into a nightmare, and I was admitted into the hospital at 21 weeks and 5 days. I was diagnosed with an Incompetent Cervix with hourglass membranes and would spend the next five days in the hospital fighting for our daughter’s life. I was upside down in the bed in Trendelenburg, limited to a handful of tocolytics due to the gestation of my pregnancy and we weren’t given a chance when we begged for a NICU consult… The emergent cerclage attempt would fail, my water would break, and our daughter would be born alive at 22 weeks and 3 days…
23 was this hospital’s magic number… 4 days away for our daughter… 4… A number that I struggle with, even to this very day… But please don’t think that we blame the hospital or staff… We don’t. They did absolutely everything in their power to keep me pregnant. They were compassionate. They prayed with us. They took care of us. They went above and beyond in the every way that they could. But she was born too early, and we lost her… And we were suddenly catapulted into this painful world of child loss…
Something I knew nothing of prior to that day I was admitted into the hospital. Even as a nurse. I knew of early miscarriages and making it past your first trimester… But I knew nothing of second or third trimester losses. I knew nothing of the precious babies that sometimes don’t make it home. Nothing of the mothers and fathers who are left in shambles… until I became that mother. We were left broken. And the countless other parents who go through this loss as well, they’re left broken too…
And later in my second pregnancy, although I clung to the number 24, I would know nothing of the varying chances of survival for premature babies. Of the complications these babies face. And that even though you make it to 24, there would be a long emotional rollercoaster awaiting you in the NICU. I was naive to it all. It was a world I never knew existed… A world that many people still don’t know exist…
Every year, approximately 15 million babies are born prematurely. That is more than 1 in 10 babies. Complications from preterm birth is one of the leading causes of death in children 5 years and younger, and approximately 1 million children die each year due to these complications.
These babies deserve more. These parents deserve more.
There was a point in time when 24 weeks was not considered viable… But look at how far medicine has come… Someone, somewhere, at some point in time took a chance on a 24 week baby. Now these babies have a 50/50 chance at survival if born at that gestation.
Since our daughter’s death, I have seen stories of 22 week babies that have survived… An incredible, remarkable milestone in the medical field… My heart is with those precious babies and their parents. Someone took a chance. And those babies beat the odds.
But I think every baby deserves that chance… And it has to start somewhere… Awareness, education and research… Something I think these babies and parents, like us, deserve. So, this is our start… Bringing awareness to our life and our reality. Our daughter, Brooklyn, born at 22 weeks and 3 days. We pray that some day, in the future, we will look back and see that medicine has come even further to help these precious little fighters…
Happy 2nd birthday, Brooklyn… We miss you every day, and we will love you until the end of time… I pray that we are making you proud…
Love, The Johnsons 
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