Cooper’s Story- Down Syndrome diagnosis at birth

 

“Daddy, come look at your son”. Mike peeked his head over the curtain to see them holding up our son.

 

I looked up at him and saw his face scrunch up, the tears came, and he said “Babe he is beautiful, he is perfect, you did so good”

 

I started to cry tears of joy and relief when I heard our baby cry and saw my husband cry. They quickly brought him around the curtain. He was perfect! He was so beautiful and chubby and pink and amazing. This was truly the happiest moment of my life! They let him lay on my chest for quite a long time while they were finishing up, and I loved every single moment. I couldn’t believe he was ours! Mike said, “So you still like the name we picked for him?” “Yes, he is our little Cooper Edward Williams.”

 

Eventually, the nurse took him away to clean him up and check him over. Mike went over to watch and take pictures. I tilted my head to the side and watched as my little pink baby was cleaned off, got his umbilical cord snipped and was swaddled up tight. As I was watching him, he finally peeked his eyes open for the very 1st time. I was so excited!

 

There was something, though, as soon as I saw his eyes open, I got a sinking feeling. I thought to myself, he looks like he has Down Syndrome. Almost as quick as that thought entered my mind, it left again.

 

They would have said something, and my maternal serum showed nothing abnormal. Babies are swollen and squishy when they’re born, that’s probably all it is, I thought to myself.

 

They handed Cooper to Mike for the first time. He was swaddled tightly in his blankets and looked so cute asleep in his Dads arms. The love on my husband’s face was indescribable. Soon it was time to move me to recovery. They wheeled me to the next room, with Cooper in his little bassinet being wheeled right behind me, followed by his Daddy. Our little family!

 

Once we were settled, they took Cooper, weighed him, measured his height and all the other typical things they do when a baby is born. Very quickly that was over and they asked me if I would like to get some skin to skin time and see if he would try to nurse. They placed Cooper on top of me, and instantly our little guy rooted around and latched. Such a smart baby! The nurses were so impressed and so was I. Less than an hour old, and he was already making me so proud. I couldn’t believe how his instinct just kicked in, and he knew exactly what to do!

 

He fed for 15 minutes, and then I got to just snuggle him. Mike called my Mom and sister who had driven to Winnipeg and were waiting patiently at our house for the news. They were so happy to hear that Mommy and Baby were doing well and everything went fine with the delivery. They told us they loved us, and asked if they could come see him, but the nurses said that we couldn’t have visitors in recovery. Jordan and Mom wished us Congratulations and said they couldn’t wait to meet him the next day.

 

Then we called Mike’s parents and they were so happy to hear all was well, and told us they would see us the next morning. Around 11pm we got moved to our private room, and finally could enjoy our little guy to ourselves for a while. He was just so precious! We just stared at our sweet miracle. He was so content to sleep in my arms.

 

At one point, I remember saying to Mike, “When he opens his eyes, do you think he kind of looks like he has Down Syndrome?” Mike said that he had seen it too, but that it was probably nothing. We again pushed it out of our minds, because he looked so perfect and was doing so well, and the doctors and nurses hadn’t said anything.

 

Around 1 am, we shut off the lights and tried to get some sleep. Mike snored away on the bed beside me, but as exhausted as I was, I was too excited to sleep. I just wanted to hold my little man. I reached over and rolled Cooper’s bassinet closer to my bed and somehow managed to pick him up and lay him on me, even though my incision hurt every time I moved. All night I snuggled with him, stared at his sweet little face, stroked his chubby cheeks, and his tiny little hands. My heart swelled with love!

 

Now I finally understood when people said ‘once you meet your baby for the first time, you will never know a greater love.’ It was so true!

 

I finally was drifting off when the nurse came in to tell me to wake Coop and try feeding him. It was awkward trying to hold him in the right position, and get him to latch properly, but Coop knew exactly what to do. As soon as I held him right, he latched and ate. He was a very sleepy guy, though. He kept falling asleep and I would have to try to wake him and get him to keep eating. Blowing on his hair, a damp wash cloth, gently tickling him. It was hard to rouse him.

 

Eventually, with a fair bit of coaxing, he would wake up and eat more. This happened a few more times during the night, and then it was morning and time for everyone to wake up for the day.

 

After we had breakfast, the on-call pediatrician came to see Cooper. He leaned over Coops bassinet and listened to his heartbeat with the stethoscope. “Everything sounds great! Congratulations guys, he is so cute. So, did you guys get the maternal serum done during your pregnancy?” Instantly I got that sinking feeling in my stomach. The thoughts from the night before came rushing back. Why would he ask that question? I looked at Mike, he looked anxious. “Yeah I got the test done.” “And it came back normal?” “Yes…” “Okay, well the reason I am asking is because Cooper has a few characteristics of Down Syndrome”

 

I couldn’t breathe. Was this really happening?

At this point the only thing I remember was the look on Mike’s face. Devastation. Like he had been kicked in the stomach. I felt the same.

 

I don’t know who spoke first, Mike or the Dr., but the next thing I heard was the Dr. saying, “We are really on the fence about it. He is doing so well, and most babies with DS have feeding issues or heart or breathing problems. Many end up in the NICU immediately after birth. We are mostly concerned because he is quite floppy. This could be a symptom of hypotonia (low muscle tone). Some babies are born with this, and it is just a matter of physical therapy to help them get stronger, but it also can be a marker of Down Syndrome. His eyes also look a bit Downs, and his flattened facial features show characteristic of someone with Down Syndrome.” He went on to tell us all the characteristics of DS that Cooper did not display. There were many, and this made us feel a little better. He told us that a little later in the day, a geneticist would come and speak with us further about things, and would probably request blood work to determine for sure. He then apologized to be the bearer of unexpected news, and asked if we had any questions for him.

 

The poor Dr. I couldn’t imagine being the one to have to deliver news that causes brand new parents worlds to come crashing down in on them. I looked at Mike, and then the Dr. and then said “Yeah we have a lot of questions, but I guess we just have to wait and see.” He looked at us with genuine empathy and told us how beautiful our little guy was, told us he would check back in with us later. Then he left the room.

 

The room was silent. We didn’t know what to say. I just held Cooper and stared down at his perfect little face, wondering how it could be possible that he could have Down Syndrome. I looked back up and met Mikes teary gaze and gave him a pathetic attempt at a smile.  That’s when he broke down. He bawled, earth shaking sobs. It took everything in me not to cry. The lump in my throat wouldn’t go away. I was scared. I was shocked. But I couldn’t allow myself to be sad. My son was so beautiful. How could I be sad about him?

 

Less than an hour later, my mom walked in with my youngest sister Jordan. By this time Mike had composed himself. His eyes were red and bleary and he was staring at his phone. He was searching Down Syndrome on Google. My Mom and sister looked at us with huge megawatt smiles. I was so happy to see them and show off Cooper. I handed him to my mom and she just stared at him and told us how cute he was. Jordan quickly forced her to give him up, so she could get her snuggles in. They gushed over him. I remember looking quizzically at their faces, watching to see if their expressions gave away that they saw something out of the ordinary.

 

Did they think that he looked like he had DS? But their expressions never gave anything away. Well if they can’t see it then I’m sure he is fine, I thought to myself.

 

After they were finished gushing they sat and asked us how we were doing. Mike was quiet. They could tell, but I think they attributed it to us being tired. We didn’t say anything about what the Dr. had just told us. We just talked about how labour was, how the C section went, how I was feeling, how Cooper was eating, and about his beautiful blonde locks. After about an hour, Mike’s parents arrived. They were so ecstatic! Their 1st grandbaby! Hugs all around and then my sister handed Cooper over. They remarked over how cute he was and for the 1st time since Mike and I had heard the doctor’s words, Mike had a smile on his face again. I was so happy to see everyone doting over our perfect baby.

 

Then I remember Mikes mom said, “I don’t think he looks like either of you, he certainly doesn’t resemble any of my kids when they were babies” … And the knot in my stomach came back.

 

A half an hour later the nurse came in and said it was time to try nursing Cooper again, so everyone respectfully left and went to the waiting room while I fed my son. Mike went with them to visit. I told my mom and sister they could stay if they wanted to. About 10 minutes into feeding Cooper, a lanky red-headed man came in and hurriedly sat down, crossed his legs and put his hands in his lap “So I understand you have some concerns about your baby.” “I’m not sure if the panic showed on my face, but I certainly felt it. Who the hell was this guy, and why did he think it was okay to blurt this out. Especially when he had no clue who the other people in the room were and what their relation was to me. And without my husband present?

 

I was instantly angry. “Can you guys get Mike?” I asked my mom and Jordan. They knew something was wrong but they got up and walked out to find Mike. A minute later Mike walked in and sat down beside me. The man started speaking again. “So we believe your son has Down Syndrome” he said so matter of fact. “He is very floppy, and his facial features have characteristic of Downs. Now your maternal serum came back 1 in 3500 chance but there is still that 1. Later today we will be taking him for some blood work and by Friday we should know the results. That is, if I remember to submit everything” he said, chuckling.

 

I’m not sure what part he thought was funny. I know we weren’t laughing. This was not a joke to us. This was our son’s life, our life, that he was taking so lightly. “If I forget, then probably early next week we will let you know. But in the mean time, I would like to tell you a bit more about Down Syndrome.

 

Your son will certainly have more issues than other kids. He may have respiratory issues, congenital heart defects, and his immune system is weaker, so he will get sick easier. He is at higher risk for leukemia as well. He will, without a doubt, develop Alzheimer’s as all adults with DS eventually get Alzheimer’s. Also, his life expectancy is less than that of someone without DS. Your son will most certainly have speech issues, and his hearing and eyesight will need to be checked often as most people with DS develop problems with these things. He will be slower physically and cognitively and most definitely will be delayed in his development. He won’t be able to play contact sports…”

 

I think he had more to say, but at this point I stopped listening and just stared at my husband, and then back down at my beautiful sleeping baby. What a bleak picture he painted. What kind of life would our baby get to live? I couldn’t wait for this guy to stop talking and leave. I hated him. How could he be so nonchalant about this. How could he chuckle in the middle of this bleak statistic laden speech of his? Did he hear himself? Did he realize the gravity of what he was saying? Finally, he left.

 

We were all alone. We were left feeling hopeless. I couldn’t take my eyes off my baby. I could hear Mike sobbing beside me. He hugged me and cried on my shoulder. My eyes teared up but still I couldn’t cry. I felt so many different things. Sadness, fear, confusion, shock, pain and guilt.

 

Did I do something wrong in my pregnancy to cause Cooper to have DS? What was his life going to be like? How were we going to tell our parents? Would they still love him just as much? Were they going to be disappointed in him? In us?  I felt like it was my fault. I gave Mike a son with Down Syndrome, and my in laws a Grandson with Down Syndrome. Immediately, I felt guilty for feeling that way.

 

How could I feel these things about my baby? I felt sick. I couldn’t face Mike’s parents again. I didn’t know how to tell them. I couldn’t bear to see the disappointment in their faces when they heard the news.

 

The last thing I wanted was for people to feel sorry for us.

 

I told Mike that I couldn’t tell them. I asked him to ask them to leave and give us time to be alone. Mike’s parents walked into the room, and Mike closed the curtains. I could hear him talking to them on the other side, just inside the doorway of our hospital room. “What’s wrong?” I heard his mom ask. Mike’s voice waivered as he started to cry again “The Dr.  just told us they think Cooper has Down Syndrome” “Oh No I’m so sorry, what can we do?” his mom asked. I could hear the sadness in her voice, her heart breaking for her son, and probably for herself as well.

 

I heard his parents give him a hug as he told his parents that we just wanted to be alone and be with our son. They said goodbye, and Mike’s mom ran into the room to grab her purse. She put on a brave smile, gave me a kiss on the cheek and a hug and said “I love you” then she walked out.

 

Mike opened the curtains, tears streaming down his face and he came over and sat on the bed and hugged me and cried. I held back the tears and fingered my son’s soft chubby cheeks.

My mom came in with my sister Jordan and as I stared at my son I said “They think Cooper has Down Syndrome.” My mom teared up and gave me a hug. She felt for us. She said sorry and then spoke words of comfort. She said she could see it a little bit when she first saw him but hardly, and thought she was wrong when we didn’t say anything. To be honest I can’t remember what else was said but it was nice to have her near. My mom and sister were so positive about it, even though I know they were feeling anything but. They left the room to give us some time with our next visitors.

 

Next to show up were my sister-in-law and her boyfriend. With flowers in hand, and smiles on their faces, they came and gave us big hugs. The tension in the room was very thick and I know they could tell something was wrong. If they couldn’t feel it, they could definitely see it on my husband’s face. They congratulated us and Chris held her brand new nephew.

 

That’s when Mike decided to tell them what the Doctors had told us. I remember Chris looking at Coop closer, and admitting she couldn’t tell at all, and then saying, “It’s not a death sentence.” Those words resonated with my husband. I think he was mourning the life of his son, and these words helped him snap out of this pit of despair and realize he had an adorable son despite his probable diagnosis.

 

Part way through their visit we got a very unexpected happy surprise. In walked my Dad, my sister Jaimee, and my brother in law Kevin. They had driven in from Brandon. I had no idea they were going to come that day. I was so happy to see them. My mom had a huge smile on her face, she had known this was going to happen all along. It was such a bright spot in my day. Soon after, Chris and her boyfriend said their goodbyes. I was so thankful for their visit. Once they left, my sister Jaimee held her new nephew.

 

Then it was my Dads turn to hold his grandson. We didn’t say anything about him having Down Syndrome. I figured my mom had given them the down low when we were visiting with Mike’s sister. Also, frankly I didn’t want to talk about it anymore. I just wanted to enjoy my son and my family.

 

2 hours later it was just Mike and I in our hospital room. We sat in silence beside each other, unsure of what to say, feeling comforted by each other’s presence and thankful to be alone for the 1st time since the shocking news. It was 5 o clock and I hadn’t slept in almost 40 hours. I was exhausted. Mentally and physically DRAINED. I shared my hospital food with Mike and then tried to sleep while Mike took the bassinet and walked with Cooper through the halls. I got about 45 minutes of sleep and then it was time to nurse Coop and give him his 1st bath. Once that was over, he was wheeled away to have his blood work done.

 

For me, that was when the tears finally came. The quiet settled in, and I broke. I stood in front of the mirror in the bathroom of my hospital room and started to bawl. Mike came in and gave me a huge hug and let me cry into his chest. He held me until I was done crying. We walked back to my bed and sat side by side. My shoulders slumped, face in my hands, body wracked by giant sobs. Mike was so strong, holding me and assuring me that everything was going to be alright. I was done crying for the moment, I felt numb.

 

My mom called and asked how I was doing, and I tried to be strong. But hearing her voice, I was like a little kid again, crying to my mom. I could hear her fighting back tears and trying to be brave for me. She told me she loved me and said goodnight and we ended our call. Not even a half hour later my Dad called. “Hi Lisa, how are you doing?” “I’m okay…” I barely finished the words when I started to sob all over again.

 

I’m not even sure how my Dad understood me or if he even did. His voice quivered while he spoke to me. He told me that he loved me, that he was proud of Mike and me. That we were so strong. He told me Cooper was going to be such a huge blessing to the whole family. He said God would not give us him unless he knew we could handle it, and that Cooper was going to teach us so much. He told me it was okay to cry, and to be sad for a bit, but He said “Cooper isn’t sad, Cooper is just like any other baby. He needs love from his mom and Dad. He needs his parents to be happy” He cried too, but he was just crying for us, not because he was sad about Cooper.

 

It was a long conversation and I bawled through the entire thing, but I am so thankful for my Dad’s words. His words made me realize I was only crying for myself and my fear of the unknown. They helped me open my eyes and look at my son only as a beautiful gift from God. Our little blessing. And not only a gift to us, but a gift to all our family and friends, and anyone who got to meet him. I knew then that we were all going to learn so much from him and that Mike and I would be stronger parents because of this unexpected journey.

 

I still cried here and there. Mike and I took turns crying and being strong. Comforting each other when the other broke down. I still had moments of fear and doubt, but then a sense of peace would wash over me and I would remember my Dads reassuring words. I finally felt like I could pray again to God, and be thankful, instead of wonder what I did wrong in my life for this to happen. One thing is for sure, I never stopped loving my son. I loved him with my whole heart! When they finally brought him back again, I held him so tight, and never wanted to let him go. My beautiful perfect son. There was nothing Down about him.

 

The next day, July 6th, we were allowed to go home. We were so excited. My mom and sister were going to be there for at least a week to help me as I had a C section and wouldn’t be able to do much on my own for the first little while. Also, because Coop came 3 weeks early, my husband had to go back to work almost right away. He wouldn’t have time off for 3 more weeks. It was so nice for to have my Mom and sister there for moral support, and advice. I had never done this mom thing before.

 

That whole week Cooper just kicked butt. He nursed so well, he was gaining weight, his jaundice was going away, he was sleeping so well at night, he was such a content baby. It was hard to believe he could have DS. I truly thought that maybe the doctors were completely wrong. Maybe it was all a big mistake.

 

A week later, the Thursday after we had left the hospital, we had to go see the geneticist to find out for sure whether Cooper had Down Syndrome. We had to face the man who so brutally told us how ‘awful’ our lives would be with a son who had DS. We sat in the waiting room, hopeful he was wrong, but accepting of the more likely result.

 

The geneticist called us into a small room and told us that Cooper’s blood tests came back positive for Down Syndrome or Trisomy 21. He had 47 chromosomes instead of the 46 that most people have. There it was… Now we knew for sure.

 

Our sweet baby was taking us on a journey that we never expected to be on.

 

We said goodbye and went to our next appointment. The same day we found out that news, we had to have our son’s heart tested. Approximately 50% of babies with DS have heart problems. So, hand in hand we walked to the next floor and watched our baby get hooked up to machines and we waited again. Preparing ourselves for the worst. The heart specialist called us into his office and said “Well you will be happy to know; you should never have to see me ever again. Your son’s heart is fine.” This was great news. We left and got in our car to drive home. We both cried, out of fear and relief. We held each other’s hand in silence as Mike drove back to our house.

 

When we got there, Mike’s parents and mine, as well as my sister were waiting for us. They were all in the kitchen, waiting to hear the news. We told them Cooper’s official diagnosis and that thankfully his heart was fine.

 

I think everyone had also been hoping the doctors were wrong but they gave us hugs and brave smiles and told us everything would be okay. We knew it would be. But I think they had to say it, to reassure themselves.

 

Not long after we were home, I said goodbye to my husband as he left for work. Next it was time for my in laws and my family to go. I hugged them all goodbye and shut the door.

 

It was my first time being alone with our son Cooper. Our little blessing.

Cooper lives with his mommy, Lisa, and daddy, Mike, in Winnipeg Manitoba Canada.  Cooper is their first child who was born on July 4, 2016 and diagnosed post-natally with Down Syndrome.  His parents describe Cooper as the best thing that has ever happened to them.  Cooper has been busy teaching them about life, love, and how to view the world.  Their journey may be a bit different than they originally expected, but they love their experience.  Lisa’s hope is that, “by sharing our story we can spread awareness for Down Syndrome, and help make the world a better place for our son to grow up.”  Check out Lisa’s blog at: More to Life More to Love and follow along with them on instagram at more.to.life_more.to.love