We have a son. His name is Luke. He has Down Syndrome. I have heard the phrase “It is what he has – it is not who he is” – That could not be truer with our son. He is now 5 ½ and such a typical boy who loves trains, dinosaurs, fire fighters, trucks, and all things boy…..
I got pregnant at 41. Automatically it put me in the “High risk” category (as with anyone who gets pregnant over 40). There is no history of any medical and/or birth defects in either side of our family (except one cousin who has PKU) aside from that – nothing.
When at “high risk” it is advised you take a nuchal translucency (NT) screening (also called first trimester screening). It is to measure the base of your child’s neck looking for birth defects. My child was rolled up tighter than a roly-poly and would not stretch out for them to take the measurements. They tried everything – rolling me over, buzzing my stomach, changing the music, we even took a break in the middle when I consulted with the doctors then went back to another room with another technician and NOTHING. He was sound asleep and not moving at all. (Turns out this was an early indication as to how stubborn my child would be 😊) They said I could try another ultrasound, or 2nd step a blood test – though they warned me they had a lot of false positives and to Just let them know quickly due to the time frame.
I told my husband about the test and how our child did not want to cooperate at all and talked about trying again. He told me he did not want to know the results. That it just didn’t matter. It was our son and no matter what they said or what the results were that we would keep him and love him and raise him so there was no need to waste our time. I agreed with him 100% and did not redo the testing.
At 39 weeks they induced me at 6 am then 20 hours later (because my stubborn little child did not want to fully drop) had a c-section at 2 am and our son Luke was born. Everything seemed ok. We went back to the birthing room and my husband and mom held him then I got to & when nurses took him to finish the things they do in the room – they noticed the heel of one of his feet was turning a little blue. They put oxygen on him, the blue went away, took the oxygen off and it came back. Then told us they were taking our son to NICU for a consult. Mind you this is now 3 to 3:30 am after being up almost 24 hours and they got us to a room and left us not knowing what was going on.
At 8 am we got a visit first from his doctor assigned to him in NICU to explain to us that they noticed immediately during the consult the features of gap between the toes, almond shaped eyes, & the extreme weak muscle tone (hypotonia) in one side of his body. They sent out a blood test and the result had confirmed down syndrome. They also said Luke had a hole in his heart in the wall between his top two ventricles (an ASD) and had an infection that they were treating via IV with standard antibiotics.
A little later we did have someone come by and give us some information about down syndrome and our local group located here in Middle TN.
Once all the doctors left and during my 5 day stay in the hospital in between visiting the NICU, I tried reading all I could about Down Syndrome. I did not get very far. All that seemed to jump out at me were the obstacles that were in our future and not one child seemed to have the same obstacles we had. I just stopped reading altogether and decided then and there that I was going to learn from my son.
Our son spent a week in NICU and we brought him home. Then started the doctor appointments, the therapies, and all the extras that come with having a little extra.
We got lucky that the hole in his heart closed up on its own and never had to have heart surgery. He was actually released at the age of 4 and we do not have to go back.
My son has been in a day care that is school based since he was 1. Most of the kids in his current class have been with him since the beginning & accept him as he is. They all try to help when he needs it and love him unconditionally.
Another quote that I have to remind myself is “Having a child with Down syndrome is like taking the scenic route, you still get where you are going it just takes a little longer” And oh how true that is. I would not change a thing! You have to remember that our kids will be behind in learning some things but they are ahead in teaching us how to see with our hearts and not our eyes.
It is rough at first & you feel so overwhelmed & alone. You constantly question everything and wonder if you are making the right decision for your child. Between all the doctor appointments (we have less now that he is getting older) therapies (developmental, physical, occupational, & speech), getting him to school, and working full time (when not carting him around) REMEMBER EVERY DAY, EVERY MOMENT, AND EVERY SMILE IS WORTH IT!!!!!