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Lucy Clare

Since 2003, the March of Dimes has led Prematurity Awareness Month activities in November as part of its Prematurity Campaign.

The goals of the campaign are to reduce rates of premature birth in the United States and raise awareness of this very serious problem.

Please, we encourage you to to submit your own stories of prematurity with The Band.

Four years ago I would not have paid attention to an event like Prematurity Awareness Month and I likely would not have even known about the work of the March of Dimes. Today I am proud to be a supporter of the March of Dimes and their important work.

On March 8, 2007, my niece, Lucy Clare entered this world after my brother, Jonathan and sister-in-law, Mary, made the difficult decision to have an emergency c-section at 25 weeks gestation. In the weeks leading up to Lucy’s arrival, Jonathan and Mary knew that there was a chance Lucy would have to arrive early. She wasn’t growing and the doctors said that if she didn’t reach 500 grams (1.1 pounds) there would be very little they could do.

We all held our breath as Mary went to each ultra-sound appointment, hoping that this baby (gender unknown to all but them) would grow – just a little bit more, just a few more grams.  They were briefed by the ob-gyn on what outcomes to expect if she was born at 32, 30 or 28 weeks.

A few weeks prior to Lucy’s birth, they were given a tour of the NICU so that they would be prepared for what they may encounter.  At their last appointment, on March 8, they were told they had to make the difficult decision – wait another week and risk that she wouldn’t survive in utero or deliver that day knowing that the hospital had never had a baby that small survive.

Wanting to just give Lucy a chance, they opted for the c-section.

Lucy was a micro-preemie in every sense of the word. She weighed only 400 grams (14 ounces) and was just 10 inches in length.  At her lowest, she dropped down to 290 grams.  She was given surfactant therapy – its research was funded by the March of Dimes – for her lungs.

She breathed with the help of a ventilator for five weeks before being switched to CPAP for two months and then on nasal cannula until she was discharged.  Lucy’s time in the hospital was filled with ups and downs – it often seemed like one step forward and two steps back.  She faced many of the challenges that preemies in the NICU face: infection, retinopathy, the struggle to breathe on her own, a heart condition and feeding challenges.

Lucy spent 182 days in the hospital – six long months – before she joined her family at home.

Today Lucy is a happy, funny, easy-going 3 ½ year old who adores her big sister Stella and is starting to enjoy her baby sister Mallory. She loves books, colouring, watching Yo Gabba Gabba and dancing. But she still faces many challenges:  she takes medication for pulmonary hypertension, she relies on a feeding tube for 100% of her nutrition and she has deteriorating eyesight.  She has therapy appointments with a feeding specialist, physiotherapist, and attends weekly sensory motor sessions.

The work that the March of Dimes does through education, Prematurity Awareness Month, March for Babies and so much more, is crucial to helping all babies have a healthy start.  Our family considers itself lucky that Lucy is here today and we want to do everything we can do to raise awareness for prematurity-related issues.  It’s our chance to give back just a little bit.

Visit www.marchofdimes.com to find out how you can help!

Baby Yameen Diagnosed With Trisomy 18

The creation of human life is one of the most complex and shockingly beautiful things that our bodies are designed to do. The microanatomy that goes into this task is so astonishingly complicated that it’s a miracle any of us walk around at all.

And yet, most of us do. Most…but not all.

When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts. It is through our stories that they live forever. These children were here and they mattered.

They were loved.

They are loved.

If you’d like to add your baby’s name to our Wall of Remembrance, please fill this out so we can properly remember your lost little one.

 

 

It all started out so happy and joyful, knowing I was pregnant again – my third child. No words could express my joy.

Five months into my pregnancy, I had an abnormal blood test. The doctor immediately sent me to see the gynaecologist. That is when all my happiness turned into a shattered dream.

The gynaecologist advised an amniocentesis. My husband and I agreed to take the test right away, but we had to wait two weeks for the results. It was agony. I couldn’t sleep at night. I don’t think anyone can worry more than a mother waiting to find out about her unborn child’s health condition.

When the test resuts came in, it was positive.

My unborn son had Trisomy 18.

I was devastated. I didn’t know where to turn or what to do. Being religious people, my husband and I decided not to terminate the pregnancy. We knew God knows best, so we left it all in His hands. I continued my pregnancy, worrying and praying the entire time. My gynaecologist didn’t support our decision. She repeatedly told us that babies with Trisomy 18 don’t survive. Thankfully, I had a very surportive husband and an understanding family.

Day to day, my bond grew stronger with my baby. With every check-up, he grew and continued to gain weight. Through it all, we kept praying. At 35weeks, my baby’s heart stopped beating, and I was taken for an emergency c-section.

When I met my son for the first time, he was so beautiful. It seemed like nothing was wrong with him. Everything looked perfect.

We laid our son to rest on the 11th of September, 2015.

I’m glad I didn’t give up and terminate the pregnancy. He was a total blessing in my life.