Triangle Down Syndrome Network

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located in central North Carolina, serving families in Wake, Durham and Orange and surrounding counties

Jaime Rose 

If you are reading this now, then you have probably just found out that your baby may have Down syndrome. Four years ago, I was in the same place, without this notebook or any formal information about Trisomy 21- just my fears and ignorance - and I am a well educated woman. Since that time, I have learned so much from my daughter and from other families in the Triangle Down Syndrome Network that I am in many ways not the same person that I was - and I am much improved.

When Jaime Rose was born, my first thought when I saw her was, she has Down syndrome. How did that happen? Everyone in the room - my husband, my best friend, my wonderful doctor and those incredible obstetric nurses - were all going on and on about how beautiful she was, how strong and healthy, how she was looking them all straight in the eyes, fabulously alert for a newborn. I felt incredibly guilty; she was taking her first breaths and all I could think was something bad. After all, Down syndrome was bad, wasn't it? It was something they did those screening tests for - those tests I had declined to take because I knew I already had two beautiful, healthy, exceptionally bright children; I had expected this baby to be the same. There were no special needs babies in our entire family gene pool. I tried to dismiss these worrisome thoughts. I must be wrong. This child would be fine, too. Still, I couldn't shake the thoughts. She has Down syndrome, what is Down syndrome, anyway? Meanwhile, this sweet precious baby began to bob her little head towards my breast. Her movements seem so uncontrolled and awkward, I thought to myself. Actually, it was just typical rooting reflex, but I'd had two previous C-sections and had missed out on the initial postpartum moments with my son and older daughter. Then my husband Greg said, "She has such beautiful almond-shaped eyes," and I thought, people with Down syndrome have almond-shaped eyes. I remembered seeing her profile on the ultrasound at 37 weeks and commenting that she had kind of a flattened brow and her spine looked awfully flexible, but what did I know about fetal development? The technician had merely stated, "This sonogram is too late in pregnancy for diagnostic purposes.  I wasn't sure what she meant, but I had just let it go. I took a deep breath, bracing myself to ask if she had Downs, but instead I sheepishly said, "She has… kind of… puffy eyes. My obstetrician told me not to be concerned...she was a healthy 8 pound 11 ounce little girl, her APGARs were 8 and 8, very good,… that I just wasn't used to the appearance of a vaginally-delivered baby and that she might appear bruised and a little "puffy" for a couple of days or so. I trusted his good judgment. After all, she was latching on to nurse pretty well and when one of the staff members spoke my name, the baby had actually pulled away from me and turned around towards the sound of her voice.

My mother and my oldest sister came with our son Simon and daughter Katie. Everyone was thrilled with our beautiful baby girl. The kids got to give her their first sibling kisses. It was a sweet time, except for my nagging, guilty thoughts...why am I thinking this? What's wrong with me? Am I rejecting my baby? I love my baby! 
They took Jaime away to bathe her etc. and about an hour later my sister came to tell me the baby was in Special Care Nursery. My husband went down to find out why. She had pulmonary hypertension. We were terrified. Later, the doctors explained that babies often react this way from birth stress, but they were checking her heart and calling in a neonatologist just to be sure. We were still scared and worried. Our other two children had been practically Amazonian. How could this happen? Why would this happen? The Special Care folks told us our pediatrician would be in later to explain. When he came, my husband Greg had taken the children home to settle them into bed for the night. I was all alone when my pediatrician came in to reassure me that she would probably be okay in a day or two after oxygen treatments. He was one of the pediatric partners that I was not very familiar with, at that time. I came right out and told him my first thought had been that she had Down syndrome, but because she was so alert and nursed well and had turned to look at that nurse, perhaps I was just being paranoid? His only response was, "Hmmn".

The next morning another of our pediatric doctors explained tearfully that our baby did indeed have Down syndrome. It was at this time that I began to silently worry myself into an ulcer. Sure, I cried outwardly and talked about some of my feelings, but no one knew that every night for months I would wake to see if she still breathed, and every silly little awkward baby look convinced me that her intellectual development would be far from the normal range. She had a disconcerting whistling breath when she would sleep for the first months, and even though her doctor reassured me that it was thin larynx tissue (which was common in newborns with DS and would go away by the time she was 3 months old) I just knew it was some horrible respiratory distress. I hoped for the best, worked toward the best, but perhaps expected the worst.

Still, I listened to the neonatologist who explained all the discomforting statistics about compromised immune systems and this or that, but also advised us not to accept limitations. He said that some used massage therapy to help low muscle tone develop, so every time I would nurse her, I would massage her all the while. She is strong and healthy and rolled over in the typical time range and walked at 19 months.

Jaime has a small VSD (ventricular septal defect) which has never caused any health problems, just a murmur. We follow that with yearly cardiology checkups, and recently through an echo-cardiogram learned that it spontaneously healing. She also has a slight case of strabismus - turning in of one eye - because of low muscle tone, but her vision is fine and she is followed yearly by an opthamologist. We have yearly visits to the Duke comprehensive Chromosomal Clinic (where you can see all the specialists your child could need) so that we can make sure her health care is fully comprehensive and up to date, but our regular doctors at Cary Pediatrics are terrific, too. We started her on early intervention around 7 months, counting the initial evaluation visits which were very educational and informative. If only on the day she was born we could have seen her 12 months down the road, it would have saved us all a lot of grief.

Jaime's really a terrific little kid! She has a strong personality, experiences a full spectrum of human emotions. She's very smart, but picks some things up at a slower pace (like problem solving), but she figures out how to wreak enough havoc to keep us all running. Her speech is delayed, but we really got into sign language for a while (I simply bought a book - Signing Exact English - and taught myself). Her first words were at about 15 months ("Daddy", of course) and around 16 months she really began to sign and was shortly thereafter signing all kinds of animals and toy names and requesting food and drink. By the time she was 2 and a half she had some first sentences ("Daddy look moon!" and "Mommy book meow hat," which was her request for me to read The Cat in the Hat. In the Fall just before her third birthday I knew she had learned all the colors because she would point out and sign for orange, yellow, red, brown and green leaves. She was talking and signing together for what seemed like a long time, beginning to group more words more often. Then about two months after she turned three, as if by magic (but more through speech therapy), she just completely dropped all of her signs and started talking even more. So, even though I felt skeptical about using sign language at first, I have truly seen how it stimulated her brain's communication center and gave her a means to communicate while her muscle groups and neurons were developing enough for her to talk. We also read her lots of books and continue to do so. She can read our family's first names and "dog" and "cat" and a few other words. She has a natural desire to scribble and tries to write letters - some are legible and she has recognizably written her name about 3 or 4 times. And she's talking in paragraphs now. We're working on enunciation and more depth to her speech uses (more articles, pronouns, etc.).

Guiding her through her development is extra effort compared to how I played with my other kids, but "play" is the key word, because it's really extra-attentive play! And it is well worth it! Besides, when it comes down to parenting, there really is no such thing as a low-maintenance child. 

I know you may be grieving the child you expected to have. But it is the expectations you grieve. Do not confuse that with the love you have for your baby. Know from my experience to expect the best and work towards achieving it. I regret that I hid all my fears and put off meeting other parents until Jaime was half a year old. Talking with other parents has been an incredibly rewarding experience. You may find that people may feel awkward and say somewhat awkward things to you at first, like "oh, children with Down syndrome are so lovable," - which is, of course, true of all children, but they can also be exasperating like all children. They just don't fit into any stereotypical mold any more than you or I. People may also try to comfort you by saying that, "God chooses special people to have special babies." That comment used to annoy me to no end, until I really became active in this group and came into contact with so many different families. Now I am amazed, because so many different folks with this one aspect of their lives in common can share so much. I cannot encourage you enough to call and become a part of it. And also to go ahead and call the ECI folks to start Early Childhood Intervention services. Your new baby is going to surprise you in many ways! Welcome to the journey! Please do not hesitate to call any of the numbers listed on these pages. There are lots of folks, plain and professional, who are ready to lend support in any way you need. Take care, and kiss that baby for me.