Paige’s Story A Diagnosis of Down Syndrome (7 months later)

It sounds unusual, but as I have delved into this community, I have learned that it is not completely unheard of for a mom to receive a Down Syndrome diagnosis months after birth, and sometimes even longer as some developmental delays start to show up.  Some children just don’t have significant physical markers that are obvious at birth, I believe Paige was one of those sweet babies.

 

My story is very unusual but, it was also 25 years ago, things were a bit different then.

I live in a very small rural town and delivered my daughter in a town 70 miles away just to get adequate care.

I had married for the second time and had two children, a boy and a girl, from a previous marriage, but my dream was to give my new husband a child of his own. I had undergone 4 hours of micro-surgery in the city to reverse my tubal ligation that had been done 10 years prior when I had my first daughter. I was told that there wasn’t much to work with, but the surgery had gone well.

 

We tried for about 6 months, but we had been told that after that time period, chances are slim due to the growth of scar tissue. My OB did a hysterosalpingogram which is where dye is injected into the tubes to see if they are clear. The doctor and I both had a big cry as it appeared both of my tubes were blocked.

I went home and just went on about life, but about 6 weeks later I realized my period was late.

I had one of those pregnancy tests left over from the multiple I had bought and when I took it, I was pregnant!!! We were thrilled.

A few weeks went by and I began to spot, I had never done that with my previous pregnancies. So back to the doctor I went, and I was given a pamphlet on miscarriage. Nothing happened and I continued with a pleasant and uneventful pregnancy.

My doctor did want me to have Triple screening down, which I did, and it came back negative, I worked as a hair stylist up until the day I delivered my daughter. Sadly, I let the nurses talk me into an epidural which stopped my contractions. I had to be given Pitocin which was definitely no fun. The baby was getting stressed but I managed to deliver her just fine. I really can’t recall anything eventful happening after her birth.

The pediatrician that cared for her never mentioned anything, never hinted at a problem.

The only thing I noticed was she was smaller than my other two, and she had little shell-shaped ears. The only thing that was at all disappointing was that she ended up with a terrible scratch which I believed came from the ID badge the nurse wore. She handed me Paige, but then she buzzed out of the room when I asked about the scratch which became red and inflamed. I asked the pediatrician about it and he just blew it off saying babies scratch themselves all the time. She still bears that scar today.

My new baby was very hard to nurse. She would latch, but just couldn’t stay on and would tire very easily. At her 2 week check up, that same pediatrician described her as “failure” to thrive but he gave no real explanation of what that meant. I then put my daughter on formula and she did great and began gaining.

The next obstacle we faced was that after her first Sunday in the church nursery she ended up at a nearby hospital, throwing up and feverish. (maybe a bug from the nursery worker I heard telling she had been sick the day before) UGH!

The doctor that cared for her in the hospital had also cared for my other two kids; he never mentioned a thing about her having Down Syndrome either. Things from there just rocked along smoothly.

Moving along Paige was six months old and had a teary eye, my mom was afraid that a tear duct might be plugged and thought I should take her in to see the doctor. I went ahead and I took her to the NP here in our little town. I told him what we were there for; he excused himself and left the room. He was gone for a long time and finally returned with a medical book that he plopped on the exam table.

 I think your daughter has Down syndrome.

WHAT? Well, needless to say, I was stunned. He suggested we should see a pediatrician for testing.

The only comment that sticks in my mind from family or friends was my mother-in-law. After hearing the idea she might have Down syndrome, she commented, “I knew something was wrong with her, she never cries.” to which I informed her my other two were not bawl babies either!

We did go to the pediatrician, and she didn’t think Paige had Down Syndrome by just examining her. I was ready to GO. My husband, on the other hand, wanted testing. He said we needed to know and learn the truth.

I wanted to run after watching the “in training” tech stabs Paige repeatedly, trying to get a blood draw. They finally sent me out of the room.

Well, fast forward to 5 weeks later, we were informed she had an extra chromosome.

Everyone tried to convince me she didn’t have Down Syndrome, but I think deep down I knew.

The call came a week later that indeed my dolly girl had Down Syndrome.

You know, she still was the sweet little girl before I got that call.  There was absolutely nothing that had changed, not a darn thing was different, except for that label.

I just praise GOD daily that in those 7 and 1/2 months of not knowing, Paige didn’t have any health issues, such as her heart that could have taken her from us.

 

So YES she was 7 ½ months old before we knew for sure. After the call, we went to see the geneticist in the City. He had her chromosomes all out on his desk on what looked like x-ray films and tried his best to explain how Down Syndrome came about.

 

Needless to say, we went out totally confused. Everything I read about Down Syndrome was so dark, sad, and negative. The data was so outdated and suggested people should institutionalize their children.

 

Oh Lord, I couldn’t find any help, not a soul to talk to. I did know a little girl with Down Syndrome from when I was in high school, I had worked at a day care in the neighboring town, but I had never talked to her mom, mainly because I didn’t know her and that little girl was much older than my Paige.

I regretted having not having pulled that little girl onto my lap and loved on, played with, and cared for her more.

 

I remembered being somewhat fearful of her, to be honest. She was non-verbal, and a runner. I think the negative responses of the people who worked there didn’t help. In later years, I told her mother I was so sorry for not having loved her like I should have, I hope she knew I was sincere.

 

ECI came to our home every other week for one hour. Basically they just played with Paige.  That’s the only thing that she had before going to school at three years old.

 

Sadly, the lady that taught pre-school, had no experience with children that have any kind of disabilities, but the saving grace was her aide, Carmen.  Carmen was a lovely lady that really watched out for my little girl. I don’t want to be negative, you have to bear in mind, I live in a town of 1,000 people, but no one had much experience with anything except “typical” children.

 

I had plenty of “butting of the heads” with teachers over issues that arose.  Sadly my husband, who I love dearly, is not a confrontational person. He was taught, teachers are always right, so we did have some rough times over her education from day one.

 

Paige was included in the classroom until Jr. High, but then we let her decide, which might seem strange, but her being happy was our first prerogative. Paige told us she wanted to be in (her) room, which was the Resource, so that’s how we rolled.

In hind sight, now, I think she missed out on things that her classmates did so it wasn’t like she really was a part of her graduating class. I think it all depends on your child; we are all so very unique. The good thing is that Paige reads well, she writes messy, but she writes!

 

Sadly, math eluded her which was something we wished she could have conquered. We are involved with Special Olympics in the town where she was born, that is 70 miles away.  Paige also participates in equine therapy in a town 65 miles away, but you have to be pro active in order for your child to be included in things that stimulate their minds and bodies. So we drive!!!

 

Paige has 4 nephews, 1 niece, many cousins, aunts, uncles, and family and friends that adore her…She was meant to be, and I’m so thankful for the gift she is to all of us!!!

Katie, Paige’s mom, is happily married to her husband and also the mother to 2 children who do not have DS.  Katie has 4 grandchildren that light up her life as well as Paige.  Things have changed over the years with Down Syndrome, but the light that these children bring to your life will never change.