A Preemie So Small Down Syndrome Wasn’t Diagnosed

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.

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

Alice’s Story- A Down Syndrome Diagnosis Can Make a Family Stronger

It feels like such a weight on a family when the diagnosis is given…but then…then you start moving forward, one step at a time.  What first seemed so foreign and scary settles down a bit and you realize where your true strength comes from.  I have heard it from other moms too, Alice’s family is no different.  A Down syndrome diagnosis can make a family stronger.

When Alice was a few hours old, a doctor told us that Alice had a few markers consistent with Down syndrome.  A few days later, the DS diagnosis was confirmed with blood work.

The way it was presented to us was awful.  When Alice was a few hours old, a doctor came in to evaluate her and then turned to me and Tim and said, “Hi guys.  I just want to let you know that your baby has some markers that are consistent with Down syndrome.”  The doctor was extremely cold and not at all sympathetic.

When Alice was first born, we didn’t see DS at all.  She actually looked a lot like Lucy had looked at birth.  And then when the doctor told me she likely had Down syndrome, that’s ALL I could see!  That was so tough for me.  After a few weeks, though, I would look at her and not see her DS at all.  All I would see in her was her big sister!  Today, I actually forget she has Down syndrome.  Other people might look at her and know right away that she had DS.  Or maybe not.  I really don’t know.  But I don’t see it at all anymore.

Total and complete shock.  I thought this couldn’t be happening.  I didn’t know anything about Down syndrome.  I had never met anyone with Down syndrome ever.  I kept praying over and over and over that Alice didn’t have it.  Because I had no knowledge of DS at the time, I thought it was the worst thing in the world.  I kept crying and crying and saying, “This is the worst thing that could happen.”

My impression was that Alice would never walk, talk or function normally.  I thought she would basically be a vegetable.  I feared for her life that I thought would be awful.  I feared for my other daughter Lucy because I thought it would be horrible for her to have a little sister who couldn’t do anything.  I feared for my marriage because I thought we would struggle with having to take care of Alice our entire lives.  My fears went on and on and on.  I just cried and cried and cried and prayed it wasn’t really happening.

My husband and I talk about this all the time.  We chose not to do any testing when I was pregnant because nothing would have prevented us from having our baby.  We are pro-life and we would never abort, no matter what.  But when we had Alice and she was diagnosed with Down syndrome, we thought, “Should we have had the testing done just so we could have prepared ourselves?”  When we found out shortly after Alice’s birth, we had a few days and weeks of grieving and depression. But after that, we buckled up and moved forward because we had to.  Our baby was here and she was ours and she was perfectly made in God’s image.  If we would have found out prenatally, I know I would have been so stressed out the entire pregnancy.  I would have had months and months of grieving and depression, rather than just a few days or weeks.  I don’t think there is any “right” or “wrong” way to go about it.  Whether or not a couple chooses to do prenatal screening is a personal choice for each couple.  We want to have more kids, and we always talk about whether or not we will do the testing next time.  We still don’t know what we will choose.  There are pros and cons to each.

I didn’t know anyone with DS and I don’t even think I had ever seen anyone with DS!  That led to my belief when Alice was born that I was totally alone.  I thought I would be raising her with no guidebooks because, in my mind at the time, DS was so rare!  (I had NO idea how common it actually is.)

I felt shame at first.  I felt like I had produced an “imperfect” baby.  I worried about people’s reactions and I worried that they would feel bad for me.  I didn’t want anyone to feel bad for me or to give a response of “I’m sorry.”  I just wanted people to congratulate me because, at the end of the day, DS or not, I had just had a very much wanted baby.

I worried so much about everyone else.  I worried especially for my other daughter.  Once I stopped worrying about other people because I realized they were just fine, I began to accept her DS diagnosis.

We found out shortly after Alice’s birth that all of her health tests (hearing screen, heart scan, etc.) came back totally normal.  Today, at 7 months old, she still has zero health issues.

My pregnancy with Lucy was so rough!  I had nausea and vomiting almost the whole time.  Horrible migraines.  Backache like you would not believe.  Swollen legs and ankles.  I also felt Lucy move so much from 21 weeks on.  She would keep me up at night with all of her acrobatics.  My pregnancy with Alice, on the other hand, was pretty easy.  I had a little nausea at the beginning (I threw up a few times), but nothing too bad.  I also had heartburn, which I hadn’t experienced with Lucy.  I also noticed that when I was pregnant with Alice, I didn’t feel her move nearly as much as I had with Lucy.  I asked my doctor about that, and she said it was because the placenta was in the front (and it had been in the back with Lucy).  I now realize that this was actually because babies with DS typically don’t move as much in the womb because they have low muscle tone.

The birth experience was different this time around.  I had a vaginal birth with my first daughter, Lucy.  I had to be induced because she was so late (41 weeks) and the labor lasted 25 hours.  With Alice, my doctor discovered when I was 36 weeks pregnant that she was breech (feet first).  She told me that if Alice didn’t turn by my due date, I would have to have a C-section.  One week before my due date, I went into labor on my own and had to have a quick C-section because the doctors did not want her to get into the birth canal while she was breech.  The C-section itself was super quick and easy.

When Alice was first born, we were both so happy that we had another beautiful little girl!  When the doctors told us that they thought she had Down syndrome, my husband Tim was just as shocked as I was.  This wasn’t even a thought in our heads.  But after a few days, he came around to the idea… much quicker than I did, that’s for sure.  He started reading all about Down syndrome and discovered that it wasn’t as scary as we thought.  His courage and strength in those first few days and weeks will always stay with me.  I struggled with it much longer than he did.  I remember one day very early on I was having such a hard day.  I was still in shock and I was crying and felt miserable.  He looked at me and said, “I’ll be here with you every step of the way.”  My husband is not a mushy-gushy romantic person like that, but he surely came through when I needed him the most.  I’ll never ever forget that.  I really don’t know how I would have gotten through the diagnosis without him.  I had been so so so worried that the diagnosis would negatively affect our marriage.  But it didn’t.  It actually made us stronger because we had to lean on each other.  Today, I know that we are stronger than we were before Alice.  We have seen sides of each other that we didn’t know existed before.

My first few days after Alice’s diagnosis were filled with some of the darkest thoughts and feelings I have ever had.  I was in a state of shock and denial.  I did not feel connected to my new baby.  It was almost like I didn’t even want to feel connected to her because “this was not the child I was supposed to have.”  I felt like I was cheated out of the experience I expected.  I didn’t feel like this was my child.  We weren’t the people who were supposed to have a child with special needs.  You always hear about special ed teachers having kids with special needs, and that seems to make sense.  But I used to work in journalism and Tim works in IT!  We weren’t qualified for this!  That’s what I thought.  We had no knowledge of Down syndrome, and I thought God had simply chosen the wrong family for this job.  I desperately prayed for a way out.

A few weeks after Alice was born is when I truly began to embrace her diagnosis.  This was because I began talking to other moms who had children with Down syndrome.  They told me about how normal their lives are and how normal their kids with DS are.  This gave me such an enormous sense of relief.  They said their kids went to typical school, and I just had no idea that was even a possibility.  My husband and I had both gone to private schools our whole lives, and we did not have anyone at school who was in any way “different.”  So, to hear that kids with DS went to typical schools gave me such peace and comfort.  I also remember talking to a friend of a friend named Nicole who has a daughter with DS.  She told me that she too went through the stages of grief when her daughter was born.  However, after talking to a minister, she realized that God would not give her this child if He didn’t think she would raise her in the best possible way.  That really changed things for me.  I had always been close with God, but I realized I had almost forgotten about Him since Alice was born.  I figured He had forgotten about me too.  But after hearing Nicole’s take on the situation, I realized that God had been there all along and that He had given me Alice because He knew I would give her the best life possible.  It was then that I realized it was actually a tremendous blessing to have a child with DS… not a burden or a curse… but a unique blessing that I was so very privileged to receive.

Our family and friends were so amazing.  I honestly didn’t know how people would react.  We don’t have anyone in our families with Down syndrome, so they weren’t used to getting this news.  But our parents came to us with immediate acceptance and pure love for Alice.  I will never ever ever forget that.

I sometimes think about what my life would be like now if Alice had been born without Down syndrome.  And I’m just so happy she was born with Down syndrome.  I realize I sound crazy, but it’s true.  And I know that all DS mamas would agree with me.  The way you look at life changes when you have a child with Down syndrome.  You begin to notice things you didn’t before.  Your priorities shift.  You begin to notice all kinds of disabilities and really want to know those people with the disabilities.  Your relationships deepen.  Your love for your spouse grows a ton.  Your love for your kids makes your heart explode.  And you thank God every single day for handpicking you for this wonderful, beautiful, unique journey.  I would have never nominated myself for this life, but I’m so very grateful that God had the infinite wisdom to do so. Alice is now 7 months old.

Ann is a 33-year-old girl who lives  in Ohio with her husband Tim and their two daughters: Lucy (3) and Alice (7 months with Down syndrome).  Ann was a journalist until she had her kids, and now she’s a stay-at-home mom.  She still does a lot of writing as a freelancer, and she also babysits a 3-year-old boy a few days a week.  Her number one passion is being a mom!  You can follow her on Instagram @wonderlandmommyblog and check out her blog here.

Trevor’s Story- A Birth Story of Down Syndrome and Love

There are so many stories of moms who first laid eyes on their newborns and saw nothing short of angelic perfection.  Later, when they learned of their child’s diagnosis of Down Syndrome they often say they are surprised they didn’t see it right away. Love can blind us to the nuances and physical traits indicative of Down Syndrome.  That is exactly the case with Trevor and a birth story of Down Syndrome and Love.

Trevor was born on December 14, 2016 at 5:51 a.m. after only four pushes, and we held our breaths, waiting for his first cry. Our little boy was perfect; he breastfed immediately, and since his vitals were fine, he was able to spend an hour doing skin-to-skin before going back to the nursery. I remember looking at him and knowing immediately whose mouth and nose he had. Down syndrome was never on our radar, so when I saw his eyes, it didn’t hit me right away. I just kept thinking to myself whose eyes does he have? I think back now and can’t believe I didn’t see it, but he was our baby boy, and love can make such nuances irrelevant. (Honestly, I still don’t see Down syndrome when I look at Trevor. I see my sweet handsome boy.)

After spending an hour with Trevor, he was taken to the nursery for observation. Jeffrey went home to get some rest and drop Howard off with a friend. I was settled in the room and went to visit our sweet boy. The nurses never said anything about the possibility of Trevor having Ds, for which I will always be thankful, for it is best for the diagnosis to be delivered by your OB or pediatrician, so questions and concerns can be properly addressed. Later, I was in my room waiting for breakfast when Trevor’s pediatrician walked in. It was a few hours after giving birth, and I didn’t think twice about him walking in with a couple nurses. He asked if Jeffrey was around, and I explained he was home. He said he would come back later, but I told him I could tell something was wrong and wanted to know right then. I now know that, ideally, a mother should not be alone when she receives the diagnosis. This was not the doctor’s fault, of course, since he didn’t know before that I was alone, but I wasn’t letting him leave. He asked if there were any concerns during my prenatal checkups and explained Trevor had markers for Ds.

I immediately felt the world crashing down on top of me. I started rambling off comments like “we can’t have any more kids; we will never be able to leave him alone and take vacations; he will always live with us.” I’m so thankful for a pediatrician who is positive. He explained to not worry about having more kids until we talk to a geneticist (who could tell us our odds of having another child with Ds) and that Trevor would be able to achieve everything a typical child could achieve. He will be able to get a job, go to school, and even live on his own. After he left, I spent the next couple hours praying and crying. My biggest worry in that moment was how Jeffrey would feel.

After the pediatrician left I went to the nursery to see my Trevor. I was now able to see all the markers the doctor mentioned. I held my precious boy and cried for his future, his brother, and our family. I prayed Jeffrey would not be angry. I worried he would blame me and not love us. I have the most loving and caring husband, but I worried he wouldn’t want a child with Ds. We never opted for genetic testing because we knew it would not make a difference. We also never thought this would happen to us. One of the nurses told me to call Jeffrey. She knew it would all be okay once I told him. I now believe God was encouraging her to nudge me. I was a mess and was praying constantly for peace. I ended up calling Jeffrey and told him to come back early. I knew he was tired, but I needed him there.

As soon as he walked in my room, I started crying again and told him Trevor most likely had Ds. He looked me straight in my eyes and said, “Okay. Everything will be all right.” Once he said that I felt a wave of peace come over me that could only come from above. I thank God daily for answering that prayer and giving me a husband who would be strong when I was weak. We went together to the nursery and spent the next few hours with Trevor discussing how we would tell our family and friends. Our nurse came over and asked how I was feeling. I told her much better, and she just smiled and said she knew having Jeffrey there would make everything better and was what I needed.

The next few days were filled with prayer and waiting. We waited to finally bring Trevor home and start our life as a family of four. He was thankfully only in the nursery for three days, but it felt like eternity. I pray for other families who still have babies in the NICU waiting for them to be healthy enough to go home. We spent the first couple days calling all our family to tell them about Trevor. We never wanted his diagnosis to define him, but we knew we wanted to address it first instead of having people discuss it without our involvement. We stayed as positive as possible in hopes to not hear “I’m sorry” during every phone call. Everyone had a positive outlook and were very supportive. We are so blessed with an amazing extended family.

Looking back I’m so thankful I was alone when I received Trevor’s diagnosis. I don’t like to appear weak to others and this gave me the opportunity to grieve the child I thought I was supposed to have. It is very common to go through the five stages of grief after you receive a Ds (or any disability) diagnosis. I was first in denial hoping the blood test would come back negative. I thought maybe our doctor was wrong. Once I visited Trevor, I knew he wasn’t wrong, and I became angry. I was angry with God and questioned why he would do this to our family. I then became sad and didn’t know what this meant for Trevor or our family. That is when Jeffrey arrived, and I quickly moved on to acceptance. If I was surrounded by family and friends I would not have been able to process these feelings the way I needed.

Just because I have accepted Trevor’s diagnosis doesn’t mean there aren’t days when the diagnosis is hard. I mainly struggle with Trevor’s future and what will happen when he is in school. Unfortunately, kids are mean, and I pray he will be surrounded by inclusive children. I hear too many stories of our kids being bullied and that’s what keeps me up at night.

You might wonder if I would change Trevor if I could. I hate the health problems that come along with Ds, but I would never change him. I believe there are amazing traits within that 3rd copy of the 21st chromosome, and I would not want to live our life without them. I thank God daily for answering my prayer for a healthy pregnancy even if it’s not exactly what I thought a healthy pregnancy meant at that time. I would not change a thing except for the feelings I had in the beginning.

Kristin is a 35 yr old SAHM to two boys, Howard and Trevor. She has been married to her husband, Jeffrey, for 5 years and they currently reside in Wichita Falls, TX. Kristin always wanted to be a mom and has become passionate about advocating for her son, Trevor, who has Down syndrome follow their story on Instagram @kristincrumb

I was pregnant with my second child at a very busy time in my life. I was home full-time with my then two-year-old daughter, in the middle of online graduate school, I had a bake shop, I was running marathons, and my husband was in his second year of family medicine residency. We were very excited to welcome our second child, but we assumed we could continue life at the same pace with a momentary pause to get used to life with two little ones. And then, I went into labor.

One perk of being married to a doctor is being able to have progress monitored at home. We finally decided to head to the hospital when I was nearing 6cm. By the time I was checked in and settled in my labor room, I was 8cm. I soon learned I was progressing too quickly for meds, so I’d have to continue without the epidural I so dearly wanted. After pushing for three hours, however, it was decided our baby would be born via c section. I knew the drill, since my daughter had also been born through c section. Though I was exhausted and in pain, I felt a powerful sense of peace. As I relaxed into my surroundings, I allowed my husband’s colleagues, our friends, to do their what they did so well. Moments later, my husband joyfully announced, “It’s a boy!” An image flashed through my mind of my husband and the son he had waited for. Tears sat at the corners of my eyes. A boy. Samuel Thomas Amani Olsen. And then I noticed the silence.

Instead of bringing me my little Samuel, as we had previously agreed would be done, the doctor took my son to the warming table where he was immediately surrounded by the medical team. I requested they step aside when they were able so I could have a first glance at my baby, but when they did, I saw a silent newborn, arms flopping to his sides. Sam soon began crying, and I asked my husband to bring him to me. Wrapped tightly in his new receiving blanket, a hat set sweetly over his blonde hair, my baby boy opened his eyes as I spoke his name. It was in that instant, the moment his bright blue eyes met mine, that I knew our world was about to change.

It was confirmed within the hour that our son did, indeed, have Down syndrome. I was allowed to hold him for one, sacred moment in the NICU before returning to my quiet room down the hall. I don’t remember many details of that night, but I do remember we made a list of calls to close friends and family. We had a strong mixture of emotions. There are two calls I remember making in the wee hours of that first night. One was to my dearest friend, Jessica, and the other was to my sister, Becky. I remember those calls so well because, upon hearing our Samuel’s diagnosis, both cried. Jessica cried with me over the change in expectations, the unknown path ahead, the fear of what the diagnosis meant. Becky cried with me in joy that Samuel had been chosen for our family. She had previously spent multiple years working in a group home for teenage boys with special needs who didn’t all come from loving families. Two of my dearest friends, crying with me for very different reasons, but both were so necessary for my heart.

Our little man spent two weeks in the NICU as he learned to eat and breathe on his own. During that time, my husband went through a time of grieving. We both knew this was a healthy part of accepting our “new normal” and I encouraged him to take the time he needed. Once Sam was home with us and we began to adjust to being a family of four, I began to grieve. It was in the quietest moments, while we were alone together, Samuel cuddled up against my chest, that my heart ached. I wasn’t sad he had an unexpected diagnosis. I knew we could navigate that road. Rather, I felt it was my fault for somehow not protecting him. I was his mother, he grew within me, and I could not keep him safe. I cried for his future, all the unknowns, the things he may never understand or never experience. I cried because I was scared I wouldn’t always be able to protect him from the cruelty of others. There were so many unknowns. In those moments, I leaned hard into my faith and cried to Jesus. It was then I was filled with tremendous hope for all that Sammy had ahead. That hope is what got me through our early days and years.

Our Samuel is now five years old. Five! I can’t believe the time has gone so quickly and that we’ve had the opportunity to learn so much from him. We now take life at a different pace. We don’t judge by what the world says we need to be or do. We enjoy little moments more than we ever did before having Sam in our lives. We laugh over his hilarious performances, we get crazy frustrated at his endless NOs and crossed arms, and we celebrate over every new skill he masters.

Related Post: A birth Diagnosis in Johannesberg, S. Africa

We recently gained a pretty unique perspective as parents of a child with special needs. Sam was born in the United States and received all of his early intervention there through the first four years of his life. However, in the late spring of 2017, we made the transition to living life in Kenya, East Africa. This had been our hope long before Sam was born. The night of his birth, my husband and I asked the question many have asked since. Could we still move to Africa? We had great faith from early on that we would still be able to make our move and that both of our children would continue to thrive. I’m incredibly thankful to have a Masters degree in education, giving me the confidence to teach both Ella and Sam in our home. Sam will soon begin speech over Skype with a speech therapist in the States, and his physical therapy is pretty constant just by walking up and down the uneven dirt roads here.

I have begun volunteering with a special needs clinic in the hospital where my husband works and teaches. Through this work, I have very clearly witnessed the intense stigma wrapped around special needs throughout East Africa. Here, when a child is born with any kind of difference, they are most often hidden away in their home. Parents and relatives are afraid of the shame such differences will bring to their family. Therefore, children with special needs do not leave the home to attend school, church, or even to go to the hospital. Clinics like the one here are working endlessly to reach parents in villages and share the message that differences are not shameful. Children with special needs have great potential. They only need access to the appropriate resources. Organizations are working to raise funds to purchase wheelchairs and walkers, leg braces and good shoes.

Related Post: International Prenatal Diagnosis in S. Africa

Our clinic offers free physical therapy to children with special needs, which also allows mothers the opportunity to meet other mothers in their same situation. As parents of children with special needs, we know that having a community of support can be the greatest tool to empowering our own children. These small groups of support are slowly growing in Africa as more parents reach out for help instead of hiding their children. Resources here are very few, and poverty is great, but word is spreading and parents are wanting more for their children. Just last week, I attended a gathering of mothers and children with special needs. There were 80 children in attendance with their caregivers. Eighty children who are not lying on a mat in the corner of their home. Eighty children whose parents are being encouraged and finding hope through the availability of resources. The stigma is changing, even if the change is slow.

I never imaged when my Samuel was born that he could be a part of this change in Kenya. But when we walk through the hospital, people watch him with great curiosity. Adults ask if he was born with Down syndrome, if it will ever go away, if he’ll learn to talk, what he likes to do. As he playfully interacts with everyone gathered around the hospital’s central fountain, I am able to answer questions. They see that he is thriving and how he is so dearly loved! He is a living example of the potential of those with special needs. I couldn’t be prouder of who my son is, how he lives life, and all that is ahead for him on this journey.

Related Post: Down Syndrome in Tanzania- Showing the world Possibility