‘I know it may not feel like it at first, but you were chosen to be a special needs parent for a reason.’: Mom to late son with Down syndrome urges ‘love them a little extra for me’

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Disclaimer: This story contains details of child loss that may be triggering to some.

“At 11 weeks, an ultrasound found a cystic hygroma on the back of our baby’s neck which prompted genetic testing. A few weeks later, we got the news of 83% positive for Down syndrome. Eventually, the hygroma went away, but they found she had a heart defect (a complete AVSD–Atrio Ventricular Septal Defect). She was supposed to have heart surgery between 3-6 months old.  

She was also growing very slowly. Sometimes, she measured 4-5 weeks behind, and sometimes she measured about 2 weeks behind. Starting once a week then eventually twice a week, doctors had been monitoring the blood flow in the placenta, umbilical cord, and her brain frequently. While there had always been a fluctuation in blood flow, everything had been looking good. 

Even our doctors didn’t expect this outcome. Ultimately, our little Lainey didn’t have the strength to keep fighting. Perhaps there were other complications we didn’t know about that contributed. We gave her every chance we could, and we would do it all over again if given an opportunity. 

Parents who are expecting their little one to be born with Down syndrome, please don’t be scared. 

When we were given the diagnosis via the NIPT, we were relieved it wasn’t something truly scary. We denied the amnio because of risks because it wouldn’t change anything for us. We loved our baby girl from day one and will love her for eternity.  

Although we had a mostly positive outlook on everything, I’d be lying if I said I never had thoughts of fear and doubt creep up on me now and then. Concern for what her future would be like, how severe her case would be, fear of how to keep her safe from getting sick, especially with COVID. Before her surgery, I doubted if I would be a good enough mom for a special needs child.  

But PLEASE don’t be afraid. Please give your baby the chance of life. I know you won’t regret it. 

Unfortunately, our baby girl, Lainey Rose, was born our sleeping beauty on August 14, 2020, at 12:44 a.m. She was born at 34 weeks, weighing just 2 pounds 15 ounces and 16 inches long.  

She had other complications, but even still, this was a surprise than not even any of our doctors expected.  

I just didn’t expect it to happen.  

I’m not here to scare anyone, that is not my intent. I want to soothe the fears of anyone who is already scared. 

I think our situation is rare among our special babies, but I’ll tell you what is not rare with them. The love we have for them is not rare, even if it’s not immediate.   

I know from reading so many other’s stories that their love for their babies grows and grows each day.  

What’s not rare is the love these babies give to everyone who cares for them. That love between these special babies and the people who love them is greater than you can imagine right now.  

I’m completely broken by our loss. I just want all who are doubting yourselves to know you are so incredibly blessed. I know it may not feel like it right now for some of you, but you are. You were chosen to be your child’s parent for a reason. Never doubt yourselves.  

On the day you get to meet your beautiful babies, please love them extra for me. Know you are not alone, and you will have more love than you’ve ever known what to do with, both for and from your babies.  

If anyone ever finds themselves in my shoes, which I pray is never, know I am here for you, even if I don’t know you.” 

Courtesy of Elizabeth Ashcroft

This story was submitted to Love What Matters by Elizabeth Ashcroft. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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