Having a child with Down syndrome is just like being a parent of a “typical” child most of the time they only time I really notice a difference is when there is something “wrong” with Maddi. She runs around and plays, she likes to watch cartoons, she loves music and dancing, and of course she bickers with her sister. It isn’t until we have to go to the Dr. or a specialist because there is something “wrong”.
When Maddi was born we knew that she was going to have to have open heart surgery to repair her holes in her heart, what we didn’t realize is that because of those holes Maddi would have a lot of issues with feeding. It all started with her first feed, my wife felt that it was important to try Breastfeeding. Now I want you to imagine that you are feeding your newborn baby and they start to turn blue, well that is what happened. She was promptly taken to the NICU. We were told that because of the holes in her heart coupled with her low muscle tone that is why she was having trouble feeding. According to an article I found at http://www.dhg.org.uk/information/feedingproblems, “Babies with Down’s Syndrome have a tendency to early feeding problems possibly as a result of poor muscle tone, and babies with a heart problem also tend to have problems as they tire easily when feeding. So babies who have a heart defect and Down’s syndrome have two things making it harder for them.”
When we left the hospital with Maddi after she was born she had what is called an NG Tube, (Nasal Gastro Tube), and had to use that till she was about 7 months old. For those of you that don’t know what is involved with this type of tube I will describe it for you. So you have this length of clear plastic tubing that is fairly small in diameter that has an adapter at one end of it. Now, starting with the other end you measure from the bottom of the ear lobe to the nose, then from the nose to right above the belly button, and mark that spot with a permanent marker. That was the easy part. The next step is one that not everyone can do; my wife always had me do it because it didn’t “bother” me, truthfully though it did “bother” me. Next you take the end without the attachment and coat about the first 3-4 inches with a medical lubricant and insert it through the nostril and down into the esophagus ending in the stomach. Now imagine trying to do this to a baby that is crying and struggling. This has an effect on you, there is your child and you are causing it discomfort. It sucks! Although I have to tell you something that I have remembered and use to this day. My wife kept telling Maddi she was sorry for having to put the tube in her nose while we were learning how to do it in the hospital. The nurse looked at her and in a very serious voice said, “Never apologize for doing what is necessary to care for your child.” So for 7 months we had to do that on fairly regular basis, along with mixing her food daily, and flushing her tube every time she was fed. It gets really old after a while. Once she was 7 months old the doctors determined that she was big enough to put a G tube in her, this meant yet another surgery. To do this the surgeon sews the stomach to the abdominal wall then creates a hole in the stomach and inserts a tube that has a plastic balloon at the end of it. The balloon is filled with a predetermined amount of water that “blows” it up; this is what keeps the G tube in place. Maddi had this G tube till she was 3years old. It is not an easy thing to use and manage, you are constantly worrying about; the tube being pulled out by accident, or the looks and comments you will get when you go into public, the lack of sleep because the pump alarm is going off in the middle of the night. I don’t know how many times we had to get up in the middle of the night because the tube that connects to the G tube had come undone and Maddi and her bed would be soaked. There were many sleepless nights.
The most frustrating part of all of it for me were the Gastro Doctors. We had very regular weigh ins and checkups. Some of the times it felt like we were being scolded or told what to do with OUR daughter. If any of you know me, you know I don’t like being told what I can and cannot do with things that belong to me, that probably isn’t the best wording but it’s the best I can come up with. It was a very long, hard fought, uphill battle to finally get the ok to have the G tube removed. Part of the delay was that the doctors didn’t want to take the tube out and her end up needing it again, which would require another surgery. I understood what they were saying but towards the end we kept telling them, she doesn’t need it anymore. They finally relented and sure enough since they took the tube out Maddi has not stopped eating. Don’t get me wrong, she has periods where she doesn’t want to eat but for the most part she will eat whatever you give her.