We have some news about our baby that we would like to share with you. Our baby has Down syndrome and a heart defect.
This was scary news for us to get, and it’s taken us awhile to process it. Fortunately we live in an area that has a lot of resources for parents like us, and we’ve been able to connect with other parents who have been through this. We still don’t know exactly what to expect, but we have a much better idea now.
In many ways our baby will be the same as most babies. It will be cute and cuddly and need lots of love and attention. It will sit up, crawl, walk, talk, go to school, read and write, learn lots of things and eventually grow up to be an adult. The differences will be that our baby will need extra time, help, and open-heart surgery at 4-6 months.
The heart defect is called an AV canal defect. This is a common defect, especially with babies that have Down syndrome. What it means is that the heart is not separated into four chambers, but is open in the center due to a missing valve. Otherwise the heart functions normally. Eventually this can cause the freshly oxygenated and depleted blood to mix, and can put more pressure on the lungs, potentially causing damage.
Thankfully there has been a surgery to fix this type of defect since the 1950’s. We have a great children’s hospital right near us in Denver with experienced surgeons that have done lots of these surgeries, and the surgery has a 98% success rate. Most likely once our baby has the surgery the heart will be repaired for life.
In addition to heart defects, there are other health problems that are common in children with Down syndrome. Whether our baby has these problems and to what degree we won’t know until we get there. Again we are lucky to live in an area with great support and resources for parents of children with Down syndrome.
At this point we do not want sympathy, but we do want love and support. You can support us by learning more about Down syndrome, staying positive and congratulatory, and recognizing that we might need extra help along the way.
Visits are encouraged! Come get to know our baby, give us a little support and Caspian the extra attention he will most likely need.
Here's a short video of Caspian explaining what Down Syndrome is to my niece Lily. He gets some of the facts slightly wrong (it is a difference between 46 and 47 chromosomes, not 36 and 37, and the soft muscle tone is called hypotonia) but otherwise he explains it beautifully, and I love the acceptance and ease with which my niece receives the news.
Here are links to some resources for you to find out more about Down syndrome and the AV Canal Defect:
A great booklet for loved ones of someone who has received a Down syndrome diagnosis, I highly recommend you take a minute to look through this, it will likely address some of the feelings and answer some of the questions you may have
Information on the AV Canal Defect
Information on the Buddy Walk, a walk to support Down syndrome This is a mile long walk that takes place all over the world to support Down syndrome awareness. Consider signing up for one near you, it would mean a lot to us.
Here are some good videos on Down syndrome:
Caution, this video might make you cry: “Dear Future Mom”
“Just Like You” - Teens with Down Syndrome and their best friends talk about what it's like
“Tim’s Place Albuquerque: Service with a Smile” - An adult with Down syndrome serves up hugs and meals, if you're in Albuquerque make sure to stop here for lunch
There are many more resources to check out, but those should get you started.
Our due date is August 14th, though the baby could easily be born at any time in August, so please don’t rush us as the due date nears, we will let everyone know when the baby is born.
We're very excited that we have been given the go ahead by the cardiologist to have a natural birth, and we've found a great option with great medical care on hand.
We will be delivering with Boulder Nurse Midwives at the Boulder Foothills Hospital Birth Center. This is one of the most progressive hospitals in the country. If the baby does need intensive care, we will simply be moved to a family suite with a special care nursery attached, allowing us to stay close while the baby receives specialized care. (Most hospitals whisk the baby away to another floor, and the parents are only allowed to visit, so we feel so lucky to have this option available to us.)
We are not finding out the gender until the baby is born, so it will be a surprise. Feel free to put your bets in now, you've got a 50-50 chance of being right.
Thanks for your support and understanding,
Taymar, Max and Caspian
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!