Twins with Down Syndrome

Twins with Down Syndrome.

Having twins is a rarity still that will cause a mom to sometimes panic, but often relish in the unique beauty of the gift she was given of not one, but two babies.  However, there is worry and panic when a mom finds out that there may be medical issues and a diagnosis involved in her journey.  This is Mindy’s story of twins with Down Syndrome.

 

Two twins, one diagnosis.

I can remember the day so vividly, the day we found out that we were having twins! I told the ultrasound tech to “shut up!” and I am pretty sure my husband almost passed out.

I had the biggest smile on my face, and after the initial shock wore off excitement took over!

You see my husband and I had been trying for two years to get pregnant, we had this big plan and of course, nothing ever turns out quite as you plan it.

I want to tell you a little bit of history about my first pregnancy. When I was pregnant with Owen, our oldest son, everything seemed textbook. Those 9 months were perfect. I felt amazing and had a healthy baby growing inside.

Or so I thought.

Owen was breech so I ended up having him via c-section at our local small hospital. Owen was the picture of perfection. However, through the day he grew lethargic and cold, turning a blue/gray color and finally about 13 hours after he was born the doctor on call decided he should call our local children’s hospital to have them come and check him.

In the end, he was rushed to our local children’s hospital over an hour away and diagnosed with a congenital heart defect, Transposition of the great arteries.

We almost lost him.

He had open heart surgery at 5 days old.  So when we found out we were having twins, right away we knew that we weren’t going to miss anything this time.

We also thought… we had our share of “bad” luck with Owen, so these babies are going to be fine.

Sometimes I wonder if we jinxed ourselves (if that’s the case, I’m glad we did)

So taking into consideration our previous experience with pregnancy, we were nervous going into our 16 week ultra sound, but I also had this sense that everything was going to be fine.

During this ultra sound we were told that Baby B (Isaac) was at a higher risk of having Down syndrome. He measured smaller, had a cystic hygroma and no nasal bone. Baby A (Eli) had a lot lower chance, initially. Twins with Down syndrome as a possible diagnosis though.

The doctor offered to do a amniocentesis and explained the risks.

Our heads were spinning. At that time we knew that we could handle one child with special needs, there was no question in our minds what we were going to do. We had been trying for years to grow our family. Two weeks later I had to go back for another ultrasound I was 18 weeks along now and this was probably the most difficult day of my entire life. This was the day that our doctor, who I can honestly say was the most gentle and caring, she delivered every piece of bad news with poise and grace.

This was the day that we found out that most likely both boys would have Down Syndrome.  Twins with Down Syndrome, and they thought Baby A (Eli) also had severe hydrops. Eli had developed fluid on his heart, lungs and abdomen. The doctor figured that he wouldn’t survive the pregnancy, she also suggested we get amnios done on both (the boys had separate sacs and placentas) The risk of the amnios was high, and it was probably the hardest and scariest decision I have ever had to make.

We decided to go  ahead and I had two amnios done.

We received a diagnosis within a week of having the amnios done. Our genetic counsellor called me with the news. Deep in my heart I already knew. I was 19 weeks along by this time.

After the call about the amnio results we set up an appointment with out MFM doctor. She was sincere and kind. She actually told us that from what she knew of us, we could handle two children with Down syndrome and encouraged us to reach out to local families.

However, she did give us options and gave us all the worst and best case scenarios, especially with Baby A having hydrops.  We were very fortunate to have her for a doctor during the initial diagnosis. We encountered some not so great ones later on. It’s sad to know that there are people in the medical field who have such a backwards way of thinking during this day and age.

In the beginning, my initial reaction was, what did I do wrong to deserve this.  I cried. I felt as if we were being punished for something. I felt it was all my fault.  What did I do wrong? I struggled for some time. Luckily I had a very active 3 year old to keep me busy.

I also knew that I needed to learn about Down Syndrome and twins with Down Syndrome and meet families who had children with DS to help me through the process. What would be, would be and this was our new life. It was a new adventure and we were going to make the best of it!!

My initial fears surrounded the boy’s hearts, would we have to go through seeing our new babies go through open heart surgery again. And all the fears that came along with that. We were also scared how it would effect Owen. How would having two brothers with special needs impact his life and how would he cope. My time would be taken up a lot more with appointments.
We didn’t really know anyone before the diagnosis, which made things all that more scary. If we would have known personally someone with DS, I think our initial outlook would have been very different.

 

We chose to tell our immediate family and close friends initially. We didn’t make it public out right, and if people asked we told them. I was scared that we would be felt sorry for and people would treat us different out of pity.

 

We were very fortunate that both boys were born very healthy.  With all the ultrasounds (I had nearly 30) and fetal echos, and all the speculations of what the boys could have. They came out perfect at 34 weeks and 2 days via c section and not needing any interventions.

I think a twin pregnancy is all together different from a singleton. But I felt amazing, and had no complications along the way with my health.

The night the boys were born, I was definitely running on auto pilot. There was one goal, to et these babies out safely and do whatever needed to bring them home.  On May 20 I went into see my OB for a check up, I was 34 weeks along. I had my ultra sound and then had to go and see my OB for a check. As soon as she walked in she said “ok! Are you ready to have these babies in tomorrow?” I panicked because I knew that meant something was wrong. It was early and we had been talking about delivery at 36-38 weeks as long as everything was going well.  The problem was, Eli wasn’t growing and the blood flow from the placenta was slowing. So it was time to have these babes!

I asked for a few days before delivery as I needed to organize and prepare at home as well as spend a few more days with Owen before life as he knew it was going to be upside down. I knew I would be in hospital for sometime recovering and then with the twins.

 

My husband through everything was very supportive. He was scared and expressed his concerns, but at the end of the day he knew these were his boys and he would be the best father he could possibly be to them. I am so fortunate to have him, he was my biggest supporter.

 

Our relationship became stronger. We knew the only way we could do this, was if we were on the same page. We developed this when going through Owens diagnosis and having the twins made it a little bit stronger. We needed to be a team. I mean having twins is a huge strain on a relationship, let alone having twins with special needs.

 

How long did it take you to look at your child/children and not see DS?  Right from the get go! I thought they were the most amazing little humans, all I saw were perfect little tiny babies!  I don’t see Down Syndrome at all. I just see perfect little boys, just as I see my oldest son Owen. My twins with Down Syndrome are a blessing.

We met some pretty amazing families who had little ones with DS. They were the most lovely families and the positives definitely out weighed anything negative that they had to say. The DS community around us was a huge support.

 

Everyone has embraced the boys! They adore them!

 

How has life changed? Oh boy, oh boy our lives are so different. So full. So wonderful. I think having twins and watching the bond is quite extraordinary, then you add this beautiful extra chromosome and it adds a whole new level.  These boys have brought us into a world that before we would have shied away from, stayed distant and been awkward around. It’s the best thing that’s ever happened to us.

How old are your babies now? The boys are 22 months! Can’t believe they will be 2 at the end of May!

The boys although identical twins, have such different personalities! Eli is our more reserved, shy guy. But once he warms up he is as chatty as can be. Eli (Baby A) is my picky eater, who will tell you what he does and doesn’t like. He also is my night owl and loves to sleep in.

Isaac on the other hand is my easy going fella. He is allll smiles and is definitely a goofball. He loves nearly all foods, which is probably why he is now bigger than his brother. Isaac loves going to bed early, and waking up with the birds. He’s my social butterfly. They both love cuddles and still melt right into my arms. The boys at nearly 2 years old are doing things that a typical 10 month old would be doing.  It’s a little selfish of me, but I kind of like that I get to have that Baby stage for so long.

Eli and Isaac are little boys who love exploring, now that they have this new found freedom of movement… those boys are all over the place. I think they are special because they are mine, but truthfully they are just little boys who learn a little differently, but learn none the less… they may do things a little differently, but they will do everything and anything they set their minds to. I just want the world to look at them no different than they would my oldest son.

 

 

 

Mindy says that its hard to talk about herself because her life currently revolves around her little people, however, traveling  and experiencing different parts of the world is a true passion. Mindy hopes she gets to share this passion with all three of her boys as they grow. You can follow the adventures of this beautiful family on instagram @atourofhollandx2