Thursday, March 21, 2013

Our First World Down Syndrome Day!

"Just when the caterpillar thought the world was over, it became a butterfly" - Proverb

Today is World Down Syndrome Day, and therefore the perfect time for me to re-enter the blogosphere. Today is meant to create awareness about Ds, including teaching real facts, sharing stories about actual people, and helping eliminate offensive or outdated language.

As a recently new mother of a beautiful daughter with Down syndrome, I still have a lot to learn about this wonderful community...actually, I should say family. The most important thing I already know for sure though, is that my baby girl is just that above all else, a baby girl!

I am not going to lie, from the time I learned of Piper's diagnosis until the moment she was born, I thought more about all the potential issues of Down syndrome than the joys of being a mom. Of course it is natural to worry, but there were times when I felt I wasn't going to be able to handle a "special needs" child. I felt like Down syndrome was going to consume my world, and always be the foremost of my thoughts.

The moment I held Piper Grace in my arms, however, my entire paradigm of raising a child with Down syndrome changed. I couldn't beleive that the only thing I saw when holding her, was the most gorgeous little angel I ever laid my eyes on. She was perfect, extra chromosone and all.

So in honor of this day, please take a few minutes of your time to visit some of the links below.

The official site of WDSD, where there are many beautiful stories about individuals with Down syndrome: WDSD

Provides some insight about preferred language when referring to people with Down syndrome: Preferred Language Guide

This touching video was shared with me by a friend shortly after I learned of Piper's diagnosis: 

A video that has been circulating the news and social media as of lately:

And of course, here are some pictures of my beautiful baby girl, Piper Grace:

Piper Grace's Birth Story, Part 1

Preface has been a while since I last blogged! It is not that I haven't wanted to, but life just got in the way. At first I didn't have any updates or anything exciting to blog about. Then I was extremely busy with work, and then the holidays, and then more work. Before I knew it I was going to the doctor's office for my 37 week check-up, which is where this story begins.....

You've Graduated!

I woke up on Friday February 1st, 2013 excited for my 37 week growth scan with the perinatolgist (doctor specializing in high risk pregnancies). My mother had just moved into her apartment the day before, and was coming to this appointment with me. She had temporarily moved to Charlotte in order to help me out with Piper because Court could only be here for a short amount of time. Since I wasn't due for a few more weeks, we had planned on spending the time prepping for Pippa's big debut and relaxing. Anyway, I couldn't wait for her to see the little one on the ultrasound that morning and then grab some lunch and go shopping. Like many things in life, however, the day did not go according to plans.

The appointment began like all the others.... the technician squirted the blue goop onto my belly and began clicking away. The anxious feelings I had from the first time I was in that room were a distant memory, replaced now by anticipation and pure excitement. She took measurements of Piper's head circumference, belly circumference, and femur length. With a couple more clicks she told me that LO's estimated weight was 5 pounds. Cue the return of anxiousness.

The technician then left the room to get the doctor so he could confirm her measurements and make his assessment. The moment she left the room, I turned to my mom and told her I was a bit worried. I knew that according to these measurements Pippa wasn't growing as much as she should be. My regular OB had told me she typically induces when growth starts to slow like this. I was scheduled to see her early the following week, so I thought that during that appointment she might decide to induce me earlier than the tentative date of February 15th we had set.

After a few nerve-wracking minutes, the doctor entered the room and repeated the same measurements the technician had took. He came up with a similar weight estimation, and without hesitation turned to me and said, "You are having this baby today!" It took about 10 seconds for the words to really sink in. As we were leaving the office, the doctor jested, "Congrats! You've graduated from here (perinatology)!"

Is This Really Happening?!

The next couple hours or so are a blur.... I remember driving home to gather my things and just saying, "Oh my God, oh my God!" It's funny how after months and months of anticipation, and even knowing that I would probably deliver early, I was not at all prepared for the news I just received. It was all I could do from not freaking out as I rushed around my apartment throwing the last minute items into my already half packed hospital bag. I took care of a few important things (including purchasing tickets for my sister and I to "The Package" tour, which had went on pre-sale that morning).

It was early afternoon when I finally arrived at the hospital. I was admitted and given a lovely hospital gown. The nurse hooked me up to a couple monitors... one measuring my contractions and the other Pippa's heartbeat. Suddenly it started to feel more and more real. My doctor came into the room a bit later and gave me the game plan, which slightly eased my mind about the immediacy of the situation. That night I was going to be given an insert of Cervadil. This would "ripen", or prepare, my cervix for the labor process. The next morning they would start the Pitocin, which is the drug that really kickstarts labor and contractions.

And so it began.

(To be continued in Part 2!)

Wednesday, November 14, 2012

Three Things I Will Not Do as a Mom

Every parent-to-be says things like, “Oh I will never be that kind of parent” and “I would never say/do something like that.” I wonder how many times these early affirmations actually hold true? I would guess not as often as one would hope.

Which is exactly why I am going to avoid making too many pledges about what type of mom I am going to be and what I will and will not do. Sure, I have a basic idea and I know the certain values I want to instill in my little Pippa. However, it is silly to think I have everything figured out already. I will do what works and fits into my overall ideals as the time comes.

That being said, there are three things I know for sure that I will not do when I am a parent. (If you can’t tell as you read the following, the inspiration for this blog struck me while I was walking through the mall parking lot to grab lunch this afternoon).

  • Everyone, here me now when I say I will NOT drive a minivan. Useful and functional…. Yes, maybe. But a nice cross-over or SUV can serve that same purpose without the instant soccer mom image.
  • I will NOT put a “Baby on Board” sign in my window. Those things drive me nuts. All I can think is, “Well good thing you told me that, because otherwise I was planning on running you off the road!”
  • I will NOT put a stick figure family in my rear window. Although, I have always thought it would be pretty funny to do that with one female decal, and about 50 cat decals, just so everyone would think I am a crazy cat lady.
Please feel free to call me out if in the future I am doing any of the above, and remind me of this very post.

Monday, November 12, 2012

You Can't Do That! (the Pregnancy "No-Nos" I Miss Most)

There are many joys that come with pregnancy, such as.....

The amazing love you feel for the little bean growing inside of you.
If you are lucky, your skin will get the wonderful “pregnancy glow”.
Your hair will most likely become luscious and thick, and your nails will be stronger than ever before.
As your baby bump becomes more evident, you will put a smile on a stranger’s face, and you will beam as they ask you questions about your due date, if you are having a boy or girl, etc.
You will celebrate this miracle with your closest family and friends, and you will oooh and ahhhh together over the teeny tiny baby clothes received at your shower.
Yes, there are many joys of pregnancy.
There are also many things you have to give up. And those things suck. Here is a list of the things I miss the most:

  • Caffeine – This sacrifice has been the toughest, because I love my coffee bold and strong in the mornings. I still wake up craving Stabucks’ Italian roast made in my French press, but instead I unsuccessfully attempt to fool my body and taste buds with a decaffeinated blend. (FYI, some studies suggest up to 200 mg of caffeine will not harm your baby. Admittedly, I have had an occasional cup of regular….but I do believe it is best to just avoid caffeine altogether).
My morning love
  • Alcohol – First of all I miss wine….there is nothing like a nice full-bodied cabernet sauvignon or a smooth malbec after a long day at work. Of course, let’s not forget beer, specifically, an IPA that is more bitter than a woman who was left by her husband of 20 years for a young, buxom blonde and more hoppy than Easter.

  • Sushi – Spicy tuna rolls have never sounded more delicious. Fresh, melt in your mouth yellow fin tuna…Need I say more?

  • Hot Yoga – I used to love attending classes with my favorite girls, but this is another pregnancy no-no (along with any other vigorous exercise), since it raises your body temperature and heart rate significantly. Also, non-prenatal yoga classes such as the ones I was attending often involve:
    • balancing poses (which should be avoided due to the risk of falling),
    • deep abdomen stretches and exercises (which should be avoided since ligaments relax during pregnancy and there is risk of pulling/straining muscles),
    • lying on the back poses (which should be avoided for prolonged period due to pressure from your enlarged uterus and fetus on the vena cava, a vein that returns blood to the heart ),
    • and lying on the stomach poses (which are obviously pretty much impossible with a pregnant belly).

Wheel Pose

  • Deli Meat – I would kill for an Italian sub right now, or a ham and cheese on white bread, or a turkey club. Unfortunately, I can't due to the risk of listeria (which is funny, because every outbreak I've heard of recently has been related to produce, NOT deli meat!)

  • Stomach Sleeping– I guess this isn’t something that is necessarily “against the rules”, but simply becomes impossible as your belly grows. Up until about 16 weeks I was still able to sleep in my normal position, but now I have been resorted to side sleeping, supported by a heap of pillows.
My pre-pregnancy sleeping position

  • Pepto Bismol – Some of the many glorious side effects of pregnancy are indigestion, nausea, and heartburn. Pepto would be the perfect cure, except it is not recommended for pregnant women…. Go figure!

  • Runny Eggs – I am usually a scrambled eggs girl, but every once in a while I crave something like Huevos Rancheros…..with yummy, oozy, over-easy eggs. But due to the risk of salmonella, I am not supposed to indulge in this over the border delight.

I think that about sums up my list of lamentations. Is there something I didn't mention that you missed while pregnant?

Wednesday, November 7, 2012

The "R-Word"

You may have missed it, but in the news recently was this tweet made by Ann Coulter (see below) and the response from Special Olympian John Franklin Stephens. This really got me thinking about the use of the word “retard” in today’s society.

While I am not defending Ann’s comment or saying she wasn’t wrong in her choice of words, part of me wonders her actual intention in the phrase. Stop and think for a minute about how often you hear people (regretfully myself included) saying, “Oh, I am such a retard; I did blah, blah, blah wrong,” or “That assignment the teacher gave us is so retarded!”
This interchangeable use of the R-word for something we perceive as silly, stupid, or of the like, has become extremely pervasive in the vocabulary of today’s generation. Heck, even the Black Eyed Peas made a very popular song called “Let’s Get Retarded” (later retitled to the more radio friendly “Let’s Get it Started”).
Thinking about the aforementioned song, what is the underlying message? Simply, the BEPs are using “retarded” as a synonym for (extremely) intoxicated or going all out crazy /partying. These actions are characterized by a disregard and ignorance of consequences, incoherence, low coordination, and flat out inane behavior. Therefore, it can be reasoned that the BEPs are saying that people considered medically “retarded” have those characteristics. I doubt that the song writers purposefully intended to make fun of the cognitively impaired, but isn’t that exactly what the song does?
One can argue that it is just a figure of speech; that it is only slang. Those excuses are only half true, however, because it while it is slang it is also a form of hate speech. This might seem like an extreme assertion at first, but consider the definition of the term:

Hate Speech is, outside the law, communication that vilifies (belittles, criticizes, etc.) a person or a group on the basis of color, disability, ethnicity, gender, nationality, race, religion, sexual orientation, or other characteristics” -From Wikipedia.
To me that pretty much describes the use of the R-word in today’s culture, which unfortunately has become so common that no one stops to think of the group it is disrespecting and demeaning. Intentional or not, it is a put-down to the intellectually disabled.
As I mentioned above, I have been guilty of using the R-word many times myself, and therefore I am not intending to criticize everyone that uses the term. I merely want to share my thoughts about something that I never took the time to consider until the issue hit close to home.
Honestly, deep down I have always known it (the R-word) wasn’t appropriate, considering I knew to filter my choice of words while in a professional setting. Regrettably I wasn’t so careful about using the term around other people. I look back and wonder how many people I might have inadvertently hurt by using the R-word, and wish I could apologize.
My hope for the future is that more people realize the hurt certain words can cause, even if they don’t mean them to. I will have to be an advocate for my daughter as well as help her become her own self-advocate. Does this mean I will call people out when I hear them use the R-word slangily? Maybe, maybe not…I suppose it depends on the situation.
What it does mean is I will at the very least modify my own language, and this is not limited to the R-word.

(Gay is another commonly used word used in a similar way).


Sunday, November 4, 2012

Heart of the Matter, Part 2

The Echo

A few weeks ago I finally had the fetal echo(cardiogram) that I mentioned in my first Heart of the Matter post. The echo is simply a sonogram in which they look at the heart in detail.

My wonderful boyfriend was able to make it to this appointment, and I was very thankful for that. Since he lives so far away, this is only the second appointment he has been to. We knew the doctor could potentially tell us serious news about our daughter's heart, so there was a lot of anxiety walking into the ultrasound a very familiar place to me.

As usual the technician began the appointment by squeezing the warm gel onto my ever growing baby bump. She picked up the wand, and in a few seconds little Pippa appeared up on the screen. The technician did her best to make us comfortable as she went about her assessment. The small talk was not enough to keep me from wondering what every click she made meant.

After about a half hour of taking all sorts of pictures and videos of our girl's heart, she left the room to get the doctor. He came in and picked up the wand, then began repeating a lot of the same things the technician did. As he was doing so, he and the technician exchanged medical talk that was beyond my understanding.

21 week sonogram... Pippa salutes!

Suddenly, I became very flush and lightheaded. I am not sure if it was the anxiety of the appointment, the now forty-five minutes of pushing and prodding by the sonogram wand, Pippa's kicks and punches back at the wand which was apparently disturbing her, or all the heat being generated by the equipment, but I felt as if I was about to either vomit or pass-out. The technician obviously noticed my discomfort, which I was trying to hide so the doctor could finish up. She began to fan me with a folder she was holding and I rolled onto my side a bit, which marginally alleviated some of my dizziness.

The doctor finished up quickly, and I slowly began to regain my composure. He then started to tell us what he had seen. Unfortunately, he didn't have any conclusive answers. The doctor told us he was suspicious based on what he saw that there was a heart defect, but the heart was still too small for him to be sure and make a definite diagnosis. He referred us to a pediatric cardiologist, and said we should schedule with him in approximately three weeks.

That appointment was on Friday.

Another Echo

It progressed very similarly to the first echo, although I was alone at this appointment. The faint feeling even returned about thirty to forty minutes into the echo. From this I conclude that anything over a half hour is too long for a sonogram. Luckily this time there was a tower fan in the room, and once this was turned on and pointed directly at me I felt tremendously better.

Unlike the first exam, however, the cardiologist had answers for me about what is going on with Pippa's heart. It was not the news I was hoping for, but the news I had been bracing myself for.

The Diagnosis

The doctor told me that based on what he saw, he is quite certain that Piper's heart has an AV Canal defect. As I mentioned in the first Heart of the Matter post, this is the most common heart defect in babies with Down syndrome. What this means is the septum of the heart (the part dividing the two left chambers and the two right chambers) is not complete. Also, there should be two separate valves between the top and bottom chambers (the atria and the ventricles), but due to the incomplete septum there is just one large valve. This defect allows for co-mingling of the blood returning from the body and the blood returning from the lungs.

Normal Four-Chamber Heart

Heart with AV Canal Defect

Pippa will need open heart surgery around two to six months in order to fix this defect, but the doctor explained that the defect will not affect the rest of my pregnancy or her birth. The doctor also assured me that the surgery has an extremely high success rate, and her Down syndrome will not increase the risk of the surgery.

Even so, I cannot help but be worried about what the future holds. I am trying to just relax and take it one day at a time, but the thought of my little girl undergoing such a serious surgery at such a young age terrifies me. I know that Piper Grace is a fighter already though, and she is strong like her momma. In the meantime, all I can do is stay calm and carry on.

Wednesday, October 24, 2012

The Emotional Roller Coaster

It is hard to believe that it has been about two and a half months since I learned of my little Pippa’s diagnosis. In that time I can’t begin to describe the emotional roller coaster that I have been on. It feels like I didn’t quite reach the line that says “You Must Be This Tall to Ride”, and that I never should have been allowed to board. Somehow I snuck on though.

The climb to the top of the track was the worst part.....butterflies swarmed in my stomach like the locusts in Egypt. The chain pulling the heavy cart to the apex made loud, mechanical clicks...but even they couldn't drown out the sound of my own heartbeat.

I knew there was still time to get off; all I had to do was just throw my hands in the air and say I wasn’t ready. In fact, whoever was operating the ride was probably expecting it. There are so many others who have seen the steep hills, loop-de-loops, and corkscrews turns in the track ahead, and decided to disembark.

But I couldn’t move from my seat. As terrified as I was, I knew I would carry regret far heavier than the fear I currently held if I didn’t continue on. So I stayed in my seat. The roller coaster surmounted the top, and in slow motion began to round the crest. Then, in a flash, it started to plummet towards the earth. Just as I thought I would never stop falling, the track bent back toward the sky and I was lifted back up. There was suddenly a feeling of weightlessness, freedom and exaltation.

Of course, in this somewhat cheesy analogy I am talking about the initial days following that fateful doctors appointment and my decision to continue on with the pregnancy. I experienced emotions I never knew I could feel, the most prevailing being grief. Although there was still a little growing bean inside me, I felt as if I had just lost her.

Some of the literature I found promised my feelings of bereavement were completely normal. But normal or not, it killed me inside to feel so sad when I really hadn’t lost anything but my paradigm of how life with a child was going to my child was going to be.

Of course, there was one person I should have turned to for emotional support (my BF and wonderful father-to-be), but I couldn’t. How could I even parallel my grief to the tragedy he had experienced less than two years prior? He knows what it truly means to lose someone. I couldn't be selfish and expect him to be stronger than he could possibly be, and I couldn't think he could make my hurt go away when he had the same hurt, plus at least tenfold more of his own. So, after a long and emotionally charged weekend I realized that I needed to be steadfast in my own decision.

After this first dizzying week, I unexpectedly started to feel amazing. I was reassured by my friends and family that I was going to be a great mom. I told myself that so much good was going to come out of this. I reclaimed the joy of pregnancy. I began to believe that all was going to work out. So what if my daughter had Down syndrome? I loved her all the same, and nothing could change that.

I would be lying, however, to say I feel this way every minute of every day. Even though a lot of my posts present potential problems (whoa, alliteration!) matter-of-factly, I am actually skimming over the true depth of the anxiety I feel. It is not that I don't have an optimistic attitude, but it is a constant battle between my head and heart. The latter whispers reassurances, but the former shouts, "THIS IS GOING TO BE HARD....REALLY HARD!!"

So as much I want to believe that everything will be okay, there are so many moments that all of a sudden I realize I am at the top of another cloud-grazing hill, and gravity is about to take over.....

Like when I am laying on an exam table and the ultrasound tech is looking for a heart defect.

And when the doctor reminds me there is still a high risk of stillbirth.

And when I think about all the upcoming doctors appointments and therapy sessions.

And when I stress about how I will manage if my boyfriend is deployed for his job.

And when I imagine the stares of pity from strangers while I am at the grocery store.

And when I have to explain to my crying Pippa why the other kids are calling her names and won't play with her.

And when I will have to fight with school administrators to ensure my daughter is provided with the proper resources to learn.

Just when I think my head is going to explode with all these apprehensions, I feel a little kick inside me. It is a friendly little reminder that no matter what, I need to stay strong for my little angel. She is going to be depending on me, and I cannot let the “what-ifs” overrule what is.

And if there is one thing I know for sure, love is what it is and always will be. Pure, tangible, unfaltering, and completely blind love.

Tuesday, October 23, 2012

A Prequel to The Beginning (You'll Change Your Mind)

Life as of early June couldn’t have been going any better. At 28 years old, everything was finally working out just as I planned: promising career, wonderful friends, and a beautiful new apartment…all in a city I absolutely loved. Besides making sure the bills were paid every month, I didn’t have a care in the world. My social schedule almost always revolved around an alcohol based activity, and when I wasn’t drinking IPA or vodka I most likely could be found practicing hot yoga or shopping at local boutiques.

Flaunting an @$$ not meant for mom jeans

I also had been dating a wonderful man for the past year. Although we were long-distance, our relationship was perfect and progressing just as I wanted it to. I felt very lucky to have met him; it is not often you meet someone you get along so easily and naturally with. We also shared many of the same important life views, one of which was prospect of having children in the future. Although a few of our reasons may have varied slightly, neither of us had intentions of becoming parents.

A doodle I made of our relationship

So what were my reasons for not wanting kids? They are expensive, they cause endless worry, they place limitations on just about every aspect of your social life, and they are messy (and stinky, and loud). Of course, these reasons are just a quick and dirty summary. The truth of the matter was that opting out of having offspring is something I just always knew, an innate feeling. Since I was old enough to start seriously thinking about the future, I just never dreamed of having children. It isn’t that I don’t like little ones; in fact I quite adore them. I always dreamt of other things, travelling the world being the first and foremost. I wanted the freedom to do whatever I wanted, whenever I wanted. The lifestyle I desired just didn’t have the time or place for poopy diapers.

There were countless times people would tell me, “Oh, you’ll change your mind one day, just you wait.” They would tell me how much joy a child can bring, and that I will never feel a greater love than that for my own child. I have always politely explained that I was well aware of those things, and I didn’t believe every aspect of parenthood was burdensome. I hesitate to add that most of this I have learned from raising my puppy, a boxer named Thor. I know some people get offended when I compare a dog and a human child, but it is ridiculous how much I love that boy. Regardless of how much responsibility he can be, I wouldn’t trade him for the world. Ignoring my experience with pet ownership, I am logical enough to deduce that people (most sane people, anyway), wouldn’t continue to reproduce if there wasn’t something uniquely rewarding about it. Like anything in life, though, it is a trade-off and I had made up my mind long ago about what I side I wanted to be on.

My early "mothering" days

Then one little pill (or lack thereof) changed my mind for me.

It was mid-June, and I only had a week and a half at work before I went on vacation. I had a lot of upcoming plans, but they mostly involved heavy amounts of drinking. As I struggled to make it through work thinking of all the upcoming debauchery, I suddenly realized I was “late”. I was on hormone birth control, so although it was odd I didn’t fret about it too much. (I had been on “the pill” since 18, and my body has always struggled to completely adjust to a regular cycle like it was supposed to). For peace of mind I stopped by the drugstore on my way home from work and picked up a cheap box of home pregnancy tests. I threw them on my bathroom counter and went about my normal evening. I was in no hurry to pee on a stick, especially when I knew the results had to be negative.

A couple hours later, I finally went to the bathroom and used my recent purchase. The instructions explained that a positive result would be indicated by a plus sign (makes sense), but it may take up to five minutes to appear. I looked down at the result window after no more than 15 seconds, there were those two intersecting lines. I felt my heart drop. Thankfully the box came with 3 tests, so I concluded the test must be defective. I used a second test. Same result. Number 3….. another plus sign. Of course I rationalized the whole batch of tests was faulty, so I ran to the store and picked up a different brand. It goes without saying there was no change in the outcome.

The undeniable digital confirmation

Suddenly the reality hit me: I was going to be a mother. Whether it was in my plans or not, there was a baby on the way. I thought as to how this possibly could have happened, and realized I had missed one pill a few weeks ago. Somehow against all odds, this one absent dose changed the course of the rest of my life.

Continue the story here.

Thursday, October 18, 2012

Hooray for Boobies! (& I don't mean the Bloodhound Gang album)

When faced with the choice of breast versus bottle, there isn’t much deliberation for me. Here are the extremely convincing factors in my decision:

  • First and foremost, breast milk is one of the healthiest things you can do for your newborn. There are many all-important antibodies and nutrients passed from mother to child, especially in the first few days. (The extra-special milk produced right after birth is called colostrum, which is thicker and a yellowish hue).
  • Of course, there is also the cost savings. If you've ever looked at the prices of formula at the store, you'll know that it is expensive!! I don’t get why anyone would want to spend the money on formula when they have a free supply of nutrition made right in their own body (unless of course there is a sound medical reason or a need to supplement).
  • Convenience! How easy is it to just pop a boob into a baby’s mouth at 3 a.m. rather than have to stumble down to the kitchen, mix up the formula, and heat the bottle?
  • Lastly, there is also the bonding experience. It is shown that the physcial contact has a postivive effect on babies, and helps them feel more secure. It can also help mothers who may suffer from post-partum depression.

I do have some concerns about being able to breastfeed, though. A common symptom of Down syndrome is hypotonia, or lack of muscle tone. The easiest way I've seen this described is that a baby will feel “floppy” in your arms.

According to my research, a baby with DS often has trouble learning how to suck properly due to hypotonia (since the muscles in and around the mouth are also affected). It typically takes more effort to start milk flow and maintain a latch during breastfeeding. Therefore babies with Down syndrome often have a difficult time getting enough milk. This can in turn affect a woman’s milk production, hence exacerbating the problem.

From all that I’ve read it is completely possible to overcome the difficulties. There are ways of holding the baby which can help mitigate low tone issues as the baby learns to nurse. Also, pumping is often necessary to ensure milk supply is adequate, and can also be used to help with starting milk flow before a nursing session.

Again, from what I’ve read and researched, pumping can be a little tricky at first, and it may be very time consuming. Having a high quality pump can certainly help alleviate any frustration, although they can be quite pricey! I was lucky enough to win the Medela Pump in Style, thanks to All About Baby Charlotte and the Nursing Mother's Place at Presbyterian Hospital.

Now it may sound really strange, but I can’t wait to use it!! (Mainly because that means I will finally be able to meet my little angel).

For mothers who have chosen to formula feed.... what made your decision?

Tuesday, October 2, 2012

Down Syndrome and Alzheimer's

Although there are more immediate concerns I have for my little girl’s health, Alzheimer’s disease is something else she may face in the future. Studies have shown that genes on the 21st chromosome contribute to the aging process, and therefore an extra copy of 21 increases the risk of a degenerative memory disease.
I am choosing to write about this today because there was a recent conference in Chicago where experts in both Down syndrome and Alzheimer’s met to discuss the link between the two afflictions. In a study funded by Johnson & Johnson, individuals with Down syndrome will be the focus of research since the occurrence of Alzheimer’s is much higher in people with DS (roughly 25% show signs by age thirty, with the rate increasing to as high as 75% with age). 

In the past the life expectancy of an individual with Down syndrome was not much past 30, so the connection was not as evident. Now that individuals are living into their 60s, scientists see an opportunity to study a disease that slowly steals people from their loved ones.

The hope is that by monitoring those with a high risk from an early age (before symptoms manifest), they may able to do better understand the progression and to prevent the causes of Alzheimer’s (brain plaques and tangles). You can read the full article here.

One of the questions posed in the article is if parents of adults with Down syndrome would be willing to sign them up for these studies. I think about what I would do, and I suppose it really depends on what the study would entail. Would it be diagnostics and observations, or more risky drug trials? Would you sign up your son or daughter to be studied?