What Does it Feel Like to Find Out Your Baby Has Down Syndrome

April 2, 2019 by Dawn@cedarsstory.com 12 Comments

How does a Down Syndrome diagnosis feel?

It feels like the air just got knocked out of you.

It feels like the tears won’t ever stop.

It feels like someone took all of your joy.

It feels like no one will ever understand.

It feels like you are alone.

It feels like you don’t know this new little life you have grown.

It feels like fear.

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Twins- Down Syndrome Diagnosis and Preparing for Open Heart Surgery

March 18, 2019 by Guest Post 6 Comments

Each story shared here has immense meaning. I have to say that the twin stories always capture my heart…see what you think about Elizabeth’s story and how it touches you.

My ray of sunshine, my heart warrior, the daughter that I’ve always wanted. She’s the youngest of 3. She has an older brother Evan, whose 3, and another brother a minute older than her, her twin, Ian.

She was born on October 5, 2016 weighing a whopping 3lbs 9oz. She was the tiniest baby I’ve ever seen.

Rewind to the moment I was having my first scan done and I heard, “I’m just going to make sure there aren’t two”

ummmm WHAT?!?!

Sure enough, as the probe is moved over… there it is!! Another little jelly bean.

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A Nurse’s tips for your NICU stay

February 1, 2019 by Dawn@cedarsstory.com 2 Comments

I asked a NICU nurse just this question, what would you want parents to know? She shared her wisdom, and here are some tips that this 20-year veteran has. A nurse’s tips for surviving NICU.

NICU life is hard, there is no question about it. But, there are some things that will help you, some nurses tips for surviving a NICU stay.

There are emotions running rampant, tears too often streaming, decisions to be made and questions to be answered. So many families who find themselves in this place don’t want to be here and don’t feel like they can clearly navigate the realm of doctors, specialists, nurses and constant beeping that is, life in the NICU.

What if you could just sit down and have a chat with one of those nurses, the ones that see your baby daily, they hand you the tissues sometimes or sometimes say the right thing at just the right time, what would they want you to know about surviving the nicu? I did just that and here are some answers from my friend, thanks Kerri!

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A Preemie So Small that Down Syndrome wasn’t Initially Detected

January 30, 2019 by Guest Post 3 Comments

A Preemie So Small Down Syndrome Wasn’t Diagnosed

We’ve all heard of miracle babies, ones that defy all odds. Babies who are born so early that their life hangs in the balance hourly. Here is the story of one such babe, one who was a Preemie so small that Down syndrome was not diagnosed at first…

I never, ever thought it would be me. I thought it was my God-given right to give birth to a perfect baby with no medical complications, have him or her handed to me in the delivery room after going full term and then be able to take my baby home. Wrong on all three counts.

Theo’s undetected Down Syndrome would have killed him if it hadn’t been picked up literally in the nick of time. A standard appointment had alerted my midwife to a small bump and ultimately a baby who was on the verge of surviving inside me, unknown to all of us. Theo is a fighter, a survivor – I think we can all attest to our children being pretty amazing with the set of cards they are born with. We ponder over these unfamiliar cards, worry, perhaps glance at them too much where our mini humans cast them to one side and just get on with it. But my baby was days, if not hours away, from being brain-damaged or still born due to a limited flow in the umbilical cord.

Theo was born the size of a mobile phone with spindly legs and arms at 29 weeks. No one knew about his diagnosis then: he was just a preemie baby. When I say just, all of the NICU experience, with its bleeps, wires and tubes was ENOUGH for any mum. I should have still been pregnant, enjoying my swelling baby, getting everything ready. Instead, I faced a grueling reality of a vulnerable baby surviving day to day. Theo was too preemature for any doctor to detect Down Syndrome and he was lucky enough not to be born with a heart defect so three weeks went by whilst we all thought we had merely months to face any seriousness. Anything different.

One morning I was asked whether my partner, Andy, was coming in that day. No, I said he was at work. Well, I had better get him in as they had some ‘life-changing’ news to tell us about Theo which had come back from a blood test. That was the moment my life shifted its course for good. Never before had I felt the reins ripped out of my hands, slapped across my face then tugged into darkness. An hour later, with Andy by my side, we learned what Trisomy 21 meant.

Down Syndrome

The thing we all get tested for because nobody wants that, right? I was terrified of it. If it was such a concern for the NHS, where we are all recommended to get the test for this undesirable outcome, why would I not be in utter, utter despair that, yes, that is what my son was born with. That is why he had stopped growing inside, that is why he is there in an incubator. In fact, he was lucky to be there at all. I may have aborted my baby if I had known about his DS in utero. I don’t know: I was never in that situation. But if I had, I would have done this through fear, ignorance and outdated perceptions. My life has changed: it has so much more in it. Yes, that might be some unwanted challenges but my life has my darling son in it and for that I am forever grateful. I am now in a community that I never knew existed and it is so inspiring and positive. I have a sensitivity and a patience I never had before

I didn’t want him to have it, I didn’t want my precious newborn to have to deal with it, I didn’t want a special needs adult in my life in 20 years, I didn’t want to face something I didn’t know and had rarely seen. In fact, I had never ever met anyone with DS. (Now, I think that is part of the problem for expectant mothers – the lack of awareness, the lack of the pure, simple reality of living with DS which is why blogs like these are so important). I was devastated which I am sure was compounded by the stress – stress on another level – of having a preemie baby. My early weeks of taking that diagnosis in (which I am sure we can all remember as we see our new reality shift and morph in our hands) was spent with Theo in NICU which I think made it harder. I had to ask permission to hold him, have him handed to me and go through the anxiety every morning of the doctors’ rounds, thinking what else are you going to discover next?

NICU + a DS diagnosis = the worst time of my life. When it should have been the best. I felt utterly cheated and lost.

My initial fears – oh, they are still there but if only my present self and Theo, of course, could take my hand back then and lead me to a window where I could see the many, many hours of blissful motherhood, of discovering Theo and him discovering me. Of making each other laugh and of the endless cuddles. If only I could bottle those moments when my heart is full of a love I never knew could be present in a person. When we are faced with a diagnosis – that’s all we can see. It is hard to look beyond at what is simply in front of us: our baby. New life. New beginnings and the blessed opportunity to nurture a person in this world. I have of course fallen in love with my happy go lucky son, with every atom of his being.

But at 17 months corrected where I am now definitely seeing a yawning delay, I do battle with my fear of his future. There’s a certain take-it-for-grantedness that I think I may have had if I had a typical child. I see it in other parents: yes, of course he or she is pointing. Walking? Oh, I can’t stop him/her. I would die to see Theo do that so easily. I know it will come but it breaks my heart a little that these things, and many, many more after them will come harder to my son. I do wish I could change that. Andy and I fear about his independence and whether he will find what we have. We met at a party in Amsterdam: standard. But our standard is not going to be Theo’s standard. That’s the bit I struggle with and will always, I suspect.

As for us as parents and partners, we are stronger – there is no doubt of that – but we know we will have challenges. Right now, we are loving being parents of a delightful, little boy. We are cutting our parenting teeth on Theo as he is shaping us into the parents we are as much as we are shaping him. In fact, he is pathing the way for his future siblings and they will (hopefully) be grateful to him as he has made us utterly grateful and, unbelievably, pretty chillled out. Theo is such an easy, little boy.

Andy is 13 years younger than me. I gave birth at 39 when Andy was 26. I think it was difficult for me to accept that it was my older eggs that had resulted in Theo’s diagnosis. Andy did not think like that all. He cried, of course. I always wondered if he felt trapped with an older woman and now a disabled baby but he never showed it. We were in this together and he displayed an emotional maturity of the like I could not have mustered at 26! We were shocked and we were very, very sad. I think feeling the weight of the diagnosis together tested our relationship, which was only a year and a half old at the time. But he is very practical and just got on with it. ‘We have each other’ I remember him saying. I remember thinking ‘but this is going to change things for us, it is going to be difficult, it won’t be what we wanted’. I wrangled over it – I still do – he put one foot in front of the other and took it day by day. To be fair, it is me who does a good deal of the child care and the hospital appointments – goodness, there are so many – where I sit, clenching everything with the fear of something else going wrong. But Andy is simply Daddy.

He doesn’t weep over the 15 year-old Theo we haven’t met yet. The young adult who I am frightened will be bullied , will be excluded from parties as he’s the special needs kid, the boy who might very well turn round and ask why him. Likewise, he doesn’t mull over the past or think about those early months. He is just here in the present. I asked him the other day if he could take Theo’s DS away from him, would he? He said he wouldn’t and I sighed a relief. Theo would not be Theo and his little burgeoning soul fills our lives with light.

Theo is 17 months corrected and a happy resident of North London. He attends nursery four days a week where he has becoming quite the artist

Claire, Theo’s mum, is a trained actress and presenter and intends to use her skills in communication and public speaking to raise awareness of Down Syndrome and the joy Theo has brought to her and her partner’s lives. Follow along on Instagram @mumonadifferentpath

Finding Beauty and Dreaming Despite a Down Syndrome Diagnosis

January 12, 2019 by Guest Post 5 Comments

We have had the privilege of sharing over 100 stories of moms receiving a Down Syndrome diagnosis either prenatally or at birth. However, it is the dads that sometimes really need to be heard from. The silent partners that sometimes don’t share their perspectives as they remain strong and silent. Other dads need to hear it too though. Here is one dad willing to share…

It’s a beautiful day…

It was a beautiful day. Sun was shining, temperature was nice, we were full of energy. Ready for the prenatal screening, a normal check after 20 weeks of pregnancy. As usual I was offered a chair, somewhere at the feet of my wife. So far so good, we were joking, looking at the tiny human jumping around. The tiny human that came as a huge surprise. But not for a moment we were shocked – we were thankful and happy right away. Somewhere halfway the appointment I started to notice something wasn’t right. The sonographer became more and more quiet. The temperature seemed to drop. After moments of silence, she started talking again.

“There seems to be something wrong. I can’t see the connection between the ventricles in the baby’s heart. I have to send you to the hospital.” Our joy had vanished. Tears came. So far we had lived the perfect life. Happily married, blessed with amazing, healthy twin girls, another healthy and happy boy, doing jobs we love, doing things we like. I asked: ‘did you not see it, or isn’t it there at all.” After a couple of long seconds she answered: “It isn’t there. But it’s reconcilable with life.”

…don’t let it get away….

We cried for minutes, outside, hugging and hope returned fast. We had to pick up our kids, who – as always – were loaded with joy. The next day we went to the hospital, where the specialists looked at our baby. A new world opened for us, being at a children’s hospital. After the ultrasound we had to wait for a team of specialists to tell the results. They were clear. Our baby had a huge hole in his heart. But: it looked good, and it is something which can be fixed with great chance of healing. So far so good. Then the cardiologist was quiet for some moments and she said “well, there is something else with these heart defects. There is a 50% chance your baby has Down syndrome too, as this heart defect is one of its markers.”

I faded out, my mind turned into fog until the cardiologist, somewhat uncomfortable, put her hand on my shoulder for a second.

The next day we decided to go for clarity and requested an amniocentesis to find out if it was true.

…sky falls.

We had a tough week ahead. To be honest: I didn’t know anything about down syndrome. Well, I knew about the cute people on television. They seemed cute, but also people that you could really connect with, somehow. Either way, for us they were people far far away, you saw them once in a while somewhere. But never ever could I picture one of those people being my son – yes, we found out it was a boy. The next week we got a phone call. Our fear had become real: the boy had trisomy 21. This time it felt like we literally collapsed because of the worst earthquake ever. We felt as if our lives had ended. Unless, of course, we decided to end the pregnancy.

“Grace finds beauty – in everything”

It crossed my mind a couple of times. It would not be fair to our other kids to have a little brother who would suck up all attention. It would be the end of our marriage – this weight was something we could not carry. And a little boy with a huge heart defect and Down syndrome wouldn’t really have a happy life, right? But these thoughts didn’t last long. In fact, we had such an amazing time together, and with friends and family. Intimate talks, opening up our hearts, sharing our doubts and vulnerabilities. It was a time of many tears, laughter, and growth. And slowly but surely, love won. Love for each other, for our girls and boy, and of course our baby boy. Happiness returned. And yes, frequently happiness got covered by clouds and fears.

“This is not a burden. It is an adventure!”

And then the new year started, with a huge bang. All of a sudden Victor Judah was born, three weeks early. Our warrior. A very smooth birth. A little baby, crying loud, healthy color, huge testicles, 10 fingers, 10 toes. A perfect baby. After three days we got to go home. Our adventure had started. And boy- did we learn a lot. We had to work hard, just like with the other kids. Victor seemed to be the pee master, peeing almost every time when we opened his diaper. Victor amazed us, amazed the doctors, amazed everyone who visited him. This boy has something special. He is pure, and pure joy. Most things I thought to know about people with down syndrome were just wrong. Victor is in most ways just like anyone else. But look him in the eyes and you meet an angel. It is like heaven opens up. It is like he is saying: “just be yourself, and love me with all you have. I am worth it – and I love you anyway.” Victor has learned me to love unconditionally. Raising kids is more about helping them find happiness, and less about what I think what makes them happy. So Victor became quite the teacher for me. We learned to slow down, live by the day, and enjoy the little gifts we are given daily.

Of course there are some tough battles to fight with Victor. Like when Victor caught a virus, only a few weeks before the open heart surgery. It was too much for him – and he had to stay at the ICU for weeks. We saw lots of nurses and doctors. I could write pages about them – some really loving and caring, and some less understanding. But our experience at the Intensive Care was somehow beautiful. Walking side by side with parents standing next to their kids who fight for their health creates unexpected bonds. It makes you look different. And to bring your child for a 6 hour surgery, knowing they will cut his chest open, and stop his heart from beating is hard, the hardest thing I ever did. But great is the Victory when you get the call: surgery is done, it was successful. Even greater is the Victory when your boy opens his eyes. Smiles at you. Gets to go home with you. Enjoys vacation. And grows, learns, laughs louder and louder. It heals us probably even more than him.

“T21 babies looking for dads willing to fight for them, for the right to exist”

There was a time I thought that I had to be an advocate for Victor, for the weaker human. Now I see Victor is his own advocate. But I need to be his dad. A dad that fights for him. That battles the stigma. That opens eyes, hearts and doors so other people stop discriminating and see the human Victor. The boy with special gifts, who happens to may have a few special needs. I know most fetuses with down syndrome are not born. It is our mission to fight the elimination of gifted people with T21. I hope to inspire dads-to-be (and moms) not to fear if they get the diagnosis down syndrome. That the voices full of stigma and false information get drowned out by voices of loving parents and their amazing kids. I hope to find lots of dads fighting by my side for the future of special kids. Making way for stories of unconditional love, of faith and victory. Opening the eyes and hearts of people at governments, and hospitals. Showing them it is not ok to erase people just by misjudgment, and be silent about it. I won’t accept that I am part of a generation that willingly choose to erase a whole group of special people. Let’s show all the couples receiving this diagnosis: life will not end! It might change, but let’s show them that with great battles come even greater victories. It will change your heart, your relationships, your way of living – in a beautiful way.

“You may say I am a dreamer”

Living with Victor makes us dream. About his bright future, with many victories. And about our future as a family. We started dreaming about having a huge house, with lots of space, surrounded by land. A place where we can create space for people who are tired of all the stress and the performance related pressure. Maybe hunted by questions, maybe the victim of stigma’s themselves. In that place we want to share the wisdom from Victor. Where through Victor’s lessons people can find rest, and learn to love unconditionally. Call me a dreamer (to afford such a place we need to win at least the lottery), but until that day we will share the lessons, the hard lessons, the lessons of love and exceeding joy with the world. We see Victor touches lives, opens hearts. Let him be an example.

Victor was fearfully and wonderfully made. And yes, our road has more bumps. But with the bumps comes way better views – and for that we are deeply thankful.