I had no idea that Gess had Down syndrome when she was born and I was rather shocked when I got the news. It was not actually the words Down syndrome that had me distressed though. I did not know anyone personally affected by DS, but I was the tolerant type and I absolutely loved the television show Life Goes On back in the 80s so I knew that wasn't "all" bad. I was just too distracted to care when I found out there was an additional diagnosis that went with it. What I was not aware of at the time was that there are several serious medical conditions that are common in people who have DS, including various heart conditions. So, while they are explaining to me that they think my daughter has Down syndrome they are also telling me that her heart is defective and it will have to be surgically repaired.
That is when and why I cried. The emotional roller-coaster I went through in the early days of her diagnosis can not really be put into to words, but I can try to share some context. Gesserine was born on October 25, 2001. That certainly was a frightening time in life. Here I am almost 8 months pregnant and America suffers the worst attack on her own soil in recent history. But it was almost two months later and America was coping and at the time they were actually in unison bound to defend and protect our country together, as one nation united, as it should be. But that is another story.
Shortly before the attack of September 11, my father had open heart surgery and he did not handle it very well. It was hard on me because I was far away and not able to be there for him. He lived in Florida, I lived in Kansas. I was very pregnant and not able to travel. It was tough on both him and my mother. But after the surgery my father told me he would never go back to the hospital again. My father was a very strong man and this laid him out like nothing had ever done to him before.
So here I was heading to the hospital not having a clue that anything was wrong and the next thing I know they are taking my baby away. They bring her back, tell me to feed her, she doesn't eat, they take her away again. Soon she is on oxygen and the next day she is on a plane to a hospital more equipped to handle her care. I hop in a car and arrive a few hours later. (We ended up staying there for the next 5 1/2 weeks.) That is when I got the news. Your daughter may have Down syndrome and she has a congenital heart defect that will require surgery. All I could think of was my dad, a very strong and stubborn man, that just suffered through that and now they have to do that to my baby??? Yeah, at this point I could care less about the whole Down syndrome thing!
In that 5 1/2 weeks I learned a lot about Down syndrome and have, of course, continued to do so. I also learned about my daughter's heart, what was wrong and what needed fixed. (I actually wrote a blog last October about Gesserine's Heart Surgery that you can read if you want the details. In it I share a newspaper article from the Kansas City Star in which Gesserine's surgery was covered.) We spent the next month or so getting her strong and ready for surgery and in January of 2002 she had the procedure done.
The Lord really worked on me through all that time and I must say he gave me a peace like you can not believe. I went from a crying mess after she was born to a calm, quiet and peaceful soul on the day she had her operation. We sat with our family and I read the Bible and felt more at peace that day then I think I had ever before. Everything went exceptionally well and her heart was repaired.
I can not praise Gesserine's surgeon enough, or the excellent staff at Children's Mercy Hospital that have helped oversee all of my daughter's medical needs. Gesserine had an appointment with her Cardiologist Dr. Rajan today (yeah that's short for his name but its what we call him). He has been her cardiologist since the surgery and has seen her through post-op all the way to now. Our last appointment was two years ago and Dr. Rajan was explaining to Gess how he had known her since she was just a little baby. She didn't like being called a baby so he had to assure her that he knew she was a big girl now.
I had prepared her for the visit today because last time getting the EKG and sonogram done were quite the task. In fact they gave up on the sono last time. This time however things went much better. At first I thought we were going to have the same trouble because they had to call in help to finish the EKG. She had no problem putting stickers on her chest, but attaching wires to it seemed a bit too much! However, when she finally found out it didn't hurt she laid still and they completed the test easily. We had similar protests during the sonogram, but again, once she realized it was painless she laid fairly still for 20 minutes watching TV while they did their thing.
And what an awesome report we got. Her heart is almost perfect! He said that there is usually some residual leakage in the valve after the surgery but hers was so minuscule that he could hardly hear the murmur. There also tends to be some wear on the valve but that too was not a problem in her case, at least not at this time. As far as her heart is concerned we can treat her like any "normal" child. We have no special directives for any other procedures, activities or anything! Because things went so well we do not need to see him again for 3 years!!
I did not mean to get long winded, I actually logged on expecting to simply share the report and a photo and call it good. Then I remembered another photo. The photo of the day before her heart surgery. I thought I would share that too, but what is a photo with no context? So here it is. A little girl with a bad heart, one that was so weak she didn't have the strength to eat on her own or even cry. Yep that is right, my daughter didn't cry for the first few months of her life. Not when hungry, wet, tired or even sick. The tube on her face was to feed her because even though she did take a bottle back then, she never ate enough to gain weight and grow. We had to feed her through a tube.
But do not let that story make you sad. Here is Gess at her checkup today.
With the advances made in modern medicine I now have a little girl with a heart that works "normally!" So normal my daughter takes ballet, loves to "swim in the pool" and will be taking Gymnastics this summer. She can cry, eat, yell, laugh, smile, hug and love you like no other. As the lady at Children's Mercy told her when she looked at her heart on the screen, "That's your heart, its where you keep all your love." It certainly does a great job of that too!
So with that I want to say: Thank you Dr. Lofland, Thank you Dr. Rajan, Thank you nurses, staff and support. Without them I can't imagine where we would be today! But most of all, Thank you Lord for giving these men and women the wisdom, patience and know how to make my daughter well!