This is the text of the speech I gave before the March For Babies in Los Angeles, CA.
My husband and I are honored to stand here. We speak to you today as happy parents of a NICU preemie who went home, and grieving parents whose baby was taken too soon.
Nothing about my pregnancy with our Daughter Madeline was easy or routine – blood clots, tumors, gestational diabetes were just the tip of the iceberg – but things really took a turn when I suffered from Preterm Premature Rupture of the Membranes at 19 weeks gestation. Unlike most women whose water breaks early, I didn’t immediately go into labor. My low amniotic fluid was managed with complete home and hospital bed rest. While I laid there on my left side, the March of Dimes website was our lifeline. Because of MarchOfDimes.com, we knew the terms doctors used, what questions to ask, and felt much more in control in what was an otherwise wildly out of our control situation.
Bedrest only managed my low amniotic fluid for so long, and after ten weeks of being on my side I had an emergency C-Section. The Doctors warned us that, despite two steroid shots to boost her lung development, our baby most likely wouldn’t cry. They were wrong. Our Madeline came out pink and crying, and it was the best sound I’d ever heard.
Our happiness was short-lived, however, when a Neonatologist came in to see us. Madeline was born at twenty eight weeks gestation, but because of my low amniotic fluid her lungs were more like those of a twenty-five weeker. She was sicker than the hospital could treat, and she needed to be transferred to UCLA in Westwood. We were so crushed. We knew she’d be in the NICU for a while but never anticipated she’d have to be at a different hospital than me.
Things were so very dire at first. My husband Mike stayed with Maddie at UCLA, while I recovered from my C Section down the road. Mike was told several times that Maddie wasn’t going to make it, and he had to call me each time to give me the news. I couldn’t stand being so far from my daughter and husband when they needed me, so I checked out of the hospital the day after she was born. I didn’t think twice about it, and I know there are so many other mothers out here who have done or would do the same if they had to.
I’ll never forget walking into the NICU for the first time. All the NOISE. The beeps of her pulse ox, the wheeze of her ventilator, the low humming of the medical staff. But the sight of my daughter with all the tubes and cords attached…It was my first real look at her. Even with everything attached to her, she was beautiful. It hurt to not be able to touch her. I didn’t get to hold her for two weeks.
In the first few days treatments pioneered by the March Of Dimes were completely responsible for Madeline’s survival. She was given surfactant so her lungs could inflate, and nitric oxide to help her blood absorb oxygen. Her NICU stay was the dreaded roller coaster we all are familiar with – infections, NEC, chest tubes. But we stood by her side, every second, minute, and hour, and we slowly watched her get better, and stronger. After 68 days, we brought our Maddie home. It was one of the happiest days of our lives.
Because her lungs were so premature, she required multiple breathing treatments per day, and often needed supplemental oxygen when she was sleeping. To Madeline, these were just minor inconveniences on her way to conquering the world. Her father and I felt blessed every day to have such a smart, loving, beautiful baby. We often would look at each other over her curly head and wonder how we got so lucky. Often, I would remember the day that my OB/GYN told me I would miscarry her. We never took our daughter for granted.
Despite our best efforts, Maddie got sick a lot. Her premature lungs were weak and she developed Chronic Lung Disease. She was hospitalized with pneumonia, bronchiolitis, and RSV. Even when sick, she handled herself with such happiness and grace. It seems so funny to say that about a toddler, but it’s true. She ALWAYS had a smile for every doctor or nurse or respiratory therapist. She never complained. She hardly ever cried. Her lungs never held her back. She wasn’t sickly at all – she was just a happy baby that, because of her weakened lungs, was hit harder by common colds.
It was so much fun to watch her grow. We celebrated every milestone – every month she grew older we’d sing happy birthday. By the time she reached seventeen months old, she was stringing together words, cruising around our home, and offering to share every toy she had. She was the kindest, most loving person I have ever known.
I wish I could say that things were different. But on April 6th, our Madeline developed a fast-acting lung infection, and her lungs, so weakened by prematurity, finally gave out. She passed away on April 7th, and our world has forever been changed. It would be easy for us to wallow in self pity, but we can’t. Maddie wouldn’t have wanted that. Instead, we are celebrating the seventeen wonderful months we had with her. Seventeen months that NO ONE expected us to have. Seventeen months that the March Of Dimes gave us. It is hard to be anything but grateful.
I have been struggling with what to say here to everyone for a week now. Our Madeline is no more special than anyone else’s child. Through happenstance, her passing has received a lot of attention, and my husband and I have searched to find a positive way to use the spotlight. It was natural for us to turn it toward the March of Dimes. We consider Maddie’s life to be a success story. She CAME HOME and she LIVED and she made us so, so happy. It is our hope that, through the funding the March of Dimes receives, other babies in Madeline’s situation won’t have the same ending. No parent should ever have to bury a child.
When you leave here today, I hope that you will close your eyes and picture a beautiful toddler with a gigantic grin. Remember that face, and remember the work the March of Dimes does. Carry that smile with you every day, and please continue to support the March of Dimes.