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There's A Better, Faster Way To Predict Sepsis
Watch 0:37

There's A Better, Faster Way To Predict Sepsis

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Miracle baby born not breathing for seven minutes came back to life

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Mum of identical twins with Down syndrome was offered an abortion six times

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Woman’s warning to expecting mums: how a scan could save your baby

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Incredible birth photos capture heartwarming moment mum realises newborn has Down syndrome

Incredible birth photos capture heartwarming moment mum realises newborn has Down syndrome

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Mum gives birth to massive 6.3kg baby girl without ANY pain relief

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'So in love' Britain's biggest family welcomes baby number 22

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Sweet Gwen: Extra cute, extra special, EXTRA JOY!

Upgraded chromosome, upgraded love - by Beth Young
  • 28 Sep 2020

Until having her little girl, Jessica Egan, 41, didn’t know her heart could be so full. Here, Jessica shares the story in her own words. 

Sweet Gwen: Extra cute, extra special, EXTRA JOY!
Instagram/@oursweetgwendolyn

As the tell-tale line darkened, there was no need to pull out another pregnancy test from the 50-pack I’d bought. 

Aged 38, after two rounds of IVF, it looked like my husband Josh and I were going to be parents! 

Maybe I should surprise him when he gets home from work, I thought.

But, dialling his number, I couldn’t wait that long! 

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Thanksgiving with our little family #Sammy #arizona #thanksgiving

‘I think I’m pregnant!’ I exclaimed the moment Josh picked up. 

‘Are you serious?!’ he gushed.

Walking on air, I felt like I was carrying the most precious gift known to mankind in my belly!

At each scan, our baby was growing perfectly. 

Then, at our 11-week ultrasound, our doc did a blood test to check for genetic abnormalities. 

Being over 35, it was routine procedure. 

But I was elated – it meant we’d get to find out our child’s gender early! 

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We loved taking the bump to my work Christmas party last week. 36 weeks and moving right along! #pregnantfortheholidays

At work a week on, my doctor phoned. 

She said she’d email the results through, I thought, feeling an immediate sense of dread. 

‘Have you seen the results via email yet?’ she asked. 

‘No…’ I replied. 

Without a pause, she said, ‘Your baby has Trisomy 21.’ 

Down syndrome…

Jumping up, I ran crying to my car and called Josh.

‘You need to come home,’ I sobbed. 

There, we called the doctor back together. 

‘It’s a baby girl,’ she told us.

Josh and I cried tears of joy. I’d really wanted a daughter, daughter, and for a brief moment, we were so happy. 

Over the next few days, though, we had more tests and scans, and together Josh and I grieved for the child we thought we’d have.

Why us? I wondered, fighting back tears. 

Then, after reaching out to our local Down syndrome foundation, we met a wonderful couple whose four-year-old son was born with the condition. 

A delight, he ran around our backyard giggling, climbed up and down our deck, and munched on the chocolate chip cookies we had put out.

He’s just a kid, I realised.

And he was perfect. 

Our baby girl might have some slight differences, but she was ours. And we’d love her fiercely because she was different. 

Our negative reaction was due to ignorance. 

So Josh and I decided to learn everything we could about Down syndrome. 

By the time I went into labour a week before Christmas in 2018, we’d come full circle and were so excited.

When our sweet Gwendolyn was born and placed in my arms, the rush of love I felt was insurmountable. 

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The next chapter to our love story is this sweet girl. Baby Gwen! We love her so much. 12.18.18 #upsyndrome #nothingdownaboutit #sweetgwendolyn

Josh was so enamoured with our bub, and with being a dad, he said, ‘Let’s do that again, right now!’

After a moment, Gwen, who’d been diagnosed with a heart condition at my 20 week scan, was whisked away to the NICU. 

But, just a week later, on Christmas Day, our beloved girl was strong enough to come home. It was magical. 

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The look of being so happy to be in this world and at home with people who love you #sweetgwendolyn
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Sammy has to compete for attention now. Sammy and Gwen love their daddy! #sweetgwendolyn
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Finally put some makeup on so I could take a picture with my daughter. Only took me 7 weeks! 😳 When my mom gave us this little preemie outfit with a hood before Gwen was born, I didn't think she would even get to wear it. Here we are almost 2 months later and it still fits! #teenybaby #sweetgwendolyn #motherdaughter #finallyamom #theluckyfew

When Gwen was two months old, Josh’s sister, Ali, gave her a special play mat that lit up and played music. 

Lying on her tummy, Gwen began grooving her little body back and forth. She was dancing! 

From that moment on, our sweet Gwennie was always rocking. 

Nursing Gwen one night, I felt my love for her bubbling up so much, I had to write it down! 

So, still cradling Gwen, I reached for my mobile and opened the notes app.

When I placed my order, I said, ‘Regular amount of chromosomes, please!’ They called me shortly after and said, ‘Great news, we went ahead and upgraded you to extra chromosomes for free! You’ll receive the extra chromosomes with your completed order in nine months,’ I wrote. 

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When I placed my order I said, "Regular amount of chromosomes, please!" That's what everyone else got and what I wanted too. They called me shortly after my order was in production and said "Great news, we went ahead and upgraded you to extra chromosomes for free! You'll receive the extra chromosomes with your completed order in 9 months." What?! I was mad! All the other orders I had seen displayed via perfect Instagram posts did NOT have extra chromosomes. Well I decided that receiving my order with extra chromosomes was better than not receiving an order at all, so I settled in to wait for this surprise upgrade to arrive. I have now had my order for two months and am writing this review to let others know the upgrade to extra chromosomes is amazing!! If offered, definitely take it! I posted some photos below of the finished product and you can see the extra chromosome is so worth it - it is extra cute, extra special, and extra-ordinary! So much extra joy. Would purchase again for sure 😬 💛💙💛💙#sweetgwendolyn #t21 #theluckyfew #upsyndrome #extrachromosome #nothingdownaboutit

Glancing down at my sweet girl with her dusting of strawberry blonde hair, I went on to write my initial reaction to the news, then my complete turnaround. 

I have now had my order for two months and am writing this review to let others know the upgrade to extra chromosomes is amazing! If offered, definitely take it! 

Then, posting the ‘review’ on Facebook, along with an adorable pic of Gwen, I added, You can see the extra chromosome is so worth it – it is extra cute, extra special, and extra-ordinary! So much extra joy.

Within no time, my post had gone viral, receiving more than 380,000 likes! 

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This smile is one of the new things Gwen has been perfecting lately. She also has done her first giggles! 😁 It's hard to capture them on video but we tried, they are in our stories right now. Each "first" that she has is so precious! #oursweetgwendolyn #upgradedto47 #nothingdownaboutit #firstgiggle #happybaby #instababy
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Latest update: Gwen looks markedly better than she has so far. We've got a few dozen smiles from here. Of all the things we've gone without, that's been the hardest. Gwen has no shortage of smiles when she's feeling well. ⁣ ⁣ However, we learned this morning that Gwen's repair isn't holding up as well as the team hoped. It's not a huge surprise to the team here because of how teeny tiny she is. In the words of Dr. Hussain, "She's as tiny on the inside as she is on the outside." :) ⁣ ⁣ So in a couple of hours they are taking her back to the OR to work on her heart valve again. At the same time, they will install a permanent pacemaker. ⁣ ⁣ It's tough news to take, especially when she looks the happiest she's ever been since surgery. But we are blessed to get this news days rather than weeks or months after surgery. And it makes the most sense for her to undergo the surgery when she's really rallying. ⁣ ⁣ The surgery will take around 3-4 hours. ⁣ ⁣ This is honestly a relief because although she has had a brief moment of wellness today, she hasn't been well up to now. Holding her caused her pain, bottle feeding didn't go well, and yesterday you could see in her eyes that things weren't healing right. She is finally sucking her thumb again today but didn't even have the strength to do that before today. We are so grateful for attentive doctors who are making judgement calls that will result in the best outcome for her and we are thrilled she is feeling better heading into surgery!⁣ ⁣ We look forward to helping others who will have heart surgery for their little ones, because of all the kindness we have been shown it will be amazing to pay it forward!
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This was Gwen's face when she heard the big news....This weekend we are taking her feeding tube out, and hopefully FOR GOOD!!! ⁣ ⁣ After 6 months straight of exclusively using a feeding tube, she started bottle feeds a couple weeks ago and has been doing great! Each day she has taken more and more of her feeds via bottle and is now pretty much 100% bottle fed!⁣ ⁣ We have started the final "tube-removal" procedures, since we can't remove it until we know for sure she can go completely without it. We are working on mixing her heart medications into her bottle instead of injecting them through her feeding tube to see how that goes. We are also testing not using the feeding tube at all to eat, but the biggest issue with that is volume. ⁣ ⁣ Previously Gwen received a continuous slow drip of formula through the tube, for 18 hours a day. Now she is working on eating only 5 times a day, with a larger volume at each time. There has been a lot of spit-up, but it gets better each day. So once we feel confident she can handle the volume from oral feeds, the feeding tube is coming out! 🙌🏻👏🏻😁⁣ ⁣ We will make sure to do a video of the final tube removal and include it in our stories today or tomorrow!⁣ ⁣ As for oxygen, that tube will still remain, and her heart doctor will continue to monitor her progress there.⁣ ⁣ Losing all her tubes eventually will have one minor drawback. As only babies can do, they sometimes turn the tubes into playthings! It's quite handy to have a toy (but also a strangulation hazard!!) at your fingertips all day long. ⁣ ⁣ As evidence, swipe to view Exhibit A, and Exhibit B. 😂😉⁣
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I just returned from my longest time away from Gwen, Josh, and Sammy dog yet. I was gone for four days on this particular work trip (and my goodness, did I miss this cute face of Gwen's!). Initially, that timeframe felt long and a little stressful to me. At some points during my trip, I would see pictures or video of Gwen and try not to get teary-eyed. What if she forgot me? Or we were less bonded upon my return? Although I had those fears, when I came home I felt surprisingly happy and at peace about being gone. I felt proud of what I had accomplished at my work conference and even more proud of how Josh handled dad duties with such care. ⁣ ⁣ This month is Down syndrome awareness month, and while I want to celebrate and acknowledge the impact Down syndrome has on our lives, I also want to acknowledge the impact it DOESN'T have on our lives. Being gone on these trips reminds me I am still a healthy, functioning member of society. I have a daughter, just like so many others! Yes she is working through a major health battle right now with her heart, and yes she will have Down syndrome forever and ever. But life goes on. We work. We play. We have happy days. We have sad days. We enjoy this life of ours!⁣ ⁣ Surrounded by my colleagues and clients on these work trips, I am reminded that our individual circumstances are no more important or difficult than those of any other. Instead of overly stressing about our life circumstances, we can take turns helping each other through the ups and downs, while acknowledging that we all face difficulty in some form or other. Gwen has a heart condition and a diagnosis. Yes she does! But what do you have? What difficulties are you experiencing today? Every time we share about the hard times we all have, they seem a little less scary. #sweetgwendolyn #upgradedto47 #downsyndrome #momblogger #workingmom #instababy #downsyndromeawarenessmonth #nothingdownaboutit

Now aged nearly two, Gwen has conquered two heart surgeries. 

She loves books and music, and taps her arm to let us know she wants to hear another song. 

When her daddy chases her and pretends to be a tickle monster, she squeals with laughter and zooms away in her adorable bear crawl, her little bottom sticking up in the air. 

Our baby girl is pure joy. 

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Gwen's favorite activity is practicing standing up anywhere Sammy dog is (although Sammy doesn't find it quite as enjoyable! 😜). Gwen will grow and sadly, Sammy is in her senior years, so having these little weekend snapshots with baby and doggie will be something for us to treasure. ⁣ ⁣ I look forward to the possibility of Gwen having a sibling someday, and having two kids to torment Sammy dog. 🤣 We are still looking at moving forward using an egg donor to complete our family but the process is slow, and certainly not a guarantee.⁣ ⁣ Too many women I know have suffered great hardship in trying to complete their families. It reminds us how fragile life is and how valuable each and every soul is that makes it to this earth. ⁣ ⁣ In the moment, it can be hard to comprehend why becoming parents and adding to a family can be so difficult. Many times it seems so unfair. I know I am personally still struggling with some aspects of the donor process, especially after the emotional road of IVF leading to Down syndrome. But I have learned so much from our struggle and Gwen's diagnosis (which I prefer now to call her "blessing"🥰) that I know ultimately I will have what it takes to work through this.⁣ ⁣ I will keep you posted on how the donor process goes but if you are struggling to complete your family - just know I am with you, and will give support and encouragement the same as you all give to me. 💛⁣
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Oh Gwen and Sammy dog. They are such good friends!⁣ ⁣ I know Sammy dog is just as proud of Gwen's development as we are. Ever since she got rid of that pesky old feeding tube, the developments have been coming right and left! Clapping her hands together with blocks, pulling up to a standing position when holding onto our hands, and even saying mama and dada! 😭😍😱 ⁣ ⁣ The excitement factor has been seriously high in our house over the last few weeks. And the best part? Watching Gwen begin to crawl around and not have to worry that she's going to get wrapped up in the feeding tube cords! ⁣ ⁣ Gwen is approaching crawling in the same way she does everything - very gently! Slow and steady seems to be Gwen's mantra. ⁣ ⁣ She also gets sidetracked from the important work of crawling forward because she constantly wants to "stink bug", and stick her little bum in the air. 🤣⁣ ⁣ Here are some videos of her crawling progression so far, including the very first time I captured her doing a little crawling in her crib!
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GWEN! Thanks for making me a mom! 💛💛💛 #happytobeyourmom #sweetgwendolyn #bigpersonality
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Usually, advocating for Down syndrome is just like these photos - happy, sweet, and lively! But as much as we advocate our hearts out, we unfortunately know that not every child with Down syndrome will end up being born. ⁣ ⁣ My friend @myles_message19 (Maddie), who is an incredible advocate for her baby boy, began putting together a care package for a mom who was pregnant and expecting a baby with Down syndrome. I wanted to donate this "Upgraded to 47" onesie from Gwen's heart shop. ⁣ ⁣ Sadly, before we could get the care package put together, we found out that it had been decided to terminate the 12 week-old fetus, after originally planning to keep it. Obviously, knowing this decision was made based on Down syndrome broke my and Maddie's hearts to the core. 💔⁣ ⁣ I don't want to pass judgment on this mother. I am sure she was devastated, and I have no idea the specific details of her life. Until we've walked in another person's shoes, we cannot judge them. But I hope that even though she chose to terminate the pregnancy, that she knows we love her and we love her baby and we hope that she will carry on being an advocate for Down syndrome. ⁣ ⁣ 💛Every baby we can save, every broken heart we can prevent, makes this world that much brighter.💛⁣ ⁣ In honor of this sweet baby, I would like to find another home for this onesie. If you know someone who is expecting a baby with Down syndrome, please tag them below 👇🏻 or let me know if you would like it for yourself. I'll randomly select someone and mail it. I look forward to seeing someone adorable in this onesie as we remember the babies that don't make it, and the hearts that break because of it.⁣ ⁣ (It can go to anyone, it doesn't have to just be someone expecting a baby with Ds. It's size 3 to 6 months. So you're welcome to direct message me or comment below if you or someone you know would like this.)⁣

‘Since Gwen’s diagnosis, I feel like the Grinch,’ I said to Josh. 

‘Why?’ he asked. 

‘Because my heart has grown three sizes,’ I smiled. 

For us, an upgraded chromosome equals upgraded love!

We are beyond lucky. 

Our sweet Gwendolyn is the best thing that’s ever happened to us.

Follow Gwen on Instagram, @oursweetgwendolyn

Beth Young
Beth Young
Beth is senior features writer for that's life! and host of the podcast How I Survived.

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There's A Better, Faster Way To Predict Sepsis
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There's A Better, Faster Way To Predict Sepsis

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Miracle baby born not breathing for seven minutes came back to life

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