Caden (4 years old) has Rubinstein Taybi Syndrome (RTS). RTS is similar to Downs Syndrome, which most of you are familiar with. Some of the characteristic of RTS are broad thumbs, broad first toes, lots of hair (Caden looked like little Elvis when he was born!), mental retardation, short stature/small size and various physical complications (Caden has several holes in his heart and struggles with constipation). To learn more about RTS visit: http://www.rubinstein-taybi.org/ The "A Book for Families" section is very informative and helpful in learning more about RTS.

There is a wonderful email listserve for RTS families. I found it while initially researching what RTS was (before we got an official diagnosis) but didn't join and send this first email until December 10, 2002 (7 days after the official RTS diagnosis for Caden). I am going to put this email here and let it speak for itself - my commentary is in (red italics) to explain a few things.

It's kind of hard to know where to begin. Life has been somewhat of a whirlwind the past few months. We would like to take this opportunity to introduce a very new RTS baby...Caden James Verhoef.

Caden was born on October 24, 2002 at 4:01am in Pella, Iowa to his very proud first-time mommy and daddy Tena and James. My pregnancy was VERY easy, in fact I would rather be pregnant than not. I felt great, felt a ton of movement from Caden, and the anticipation of our first baby was very exciting and rewarding. We spent lots of time painting rooms and buying the "necessary stuff" and just generally being overly excited. James and I have been married for 4 1/2 years and are 24 years old (we've now been married 8 years and are 28!). We decided to try to become pregnant and 1 month after that we were pregnant! Life was great, worries were few, and joy abounded.

Labor and delivery were also very easy. Let's just say that, as a first time mom, I only pushed for 11 minutes. Caden came flying into the world, but wasn't breathing. His first APGAR was a 2 and he had to be forced ventilated. We were scared, but then he came around, and we got to hold him and noticed his weird looking little thumbs. Hmmm, that can't mean a single thing, right? And all that hair....holy cow. Our "perfect" baby (whatever that is), our hopes and our dreams all wrapped into one tiny 6 pound 4 ounce package. He was finally here, and we couldn't be more excited. He had a hard time breathing while in the hospital and had to be on oxygen most of his time there. There was talk of sending him to NICU, but he started doing better all the time. He was an excellent breastfeeder (and still is) and a very alert baby.

We finally were able to take Caden home when he was just 3 days old and were told that his broad thumbs, huge soft spots, hemangioma on his forehead and undescended testicles were nothing to worry about. Our doctor set up an appointment with a geneticist anyway, just to "check things out." We were oblivious as to any possible syndromes and were just happy to be going home. Life was good, except for the mixed-up nights and days thing. Breastfeeding started to become somewhat of an issue...Caden and mommy were doing great, but where was the weight gain?? Our doctor was puzzled. He kept having us come in for weight checks. I finally asked our doctor on November 6 why exactly he was sending us to the geneticist and he mentioned Rubinstein-Taybi Syndrome. I forgot what it was called, and thought that would be best. However, I was able to remember it one night, and looked it up online. The pictures, the descriptions...everything was Caden. I freaked out. This is not what we had planned, this was not our perfect baby. I kept trying to look for things that Caden DIDN'T have and trying to talk myself into thinking he didn't have all those similarities. The weeks passed up to our December 3 genetics appointment. During those weeks, Caden was diagnosed with reflux. Another RTS thing. Caden had a heart murmur. Still another thing. My head knew he had RTS...but my heart just wouldn't believe it. It was just too rare of a syndrome, and those kinds of things only happen to other people, not to people I know, and ESPECIALLY not to me. Finally Dec. 3 rolled around...the geneticist confirmed it...your baby has RTS. I didn't think it would be so hard to finally hear it, but it was. It still is. I'm having a hard time letting go of the idea of that "perfect baby" I carried for nine months. But, I have to start remembering that Caden is perfect, in his own, perfect way.

We are very glad to be able to have a group of people like all of you who have been there, done that. Right now we feel very alone, and very overwhelmed. We see all the therapies and delays these precious ones can have, and we have no idea where to even begin. I hope I don't seem negative, but the diagnosis is still very fresh. I know that I will love Caden just the same as any other mom loves her baby, but my feelings are pretty confused right now. Our families and church family are very supportive, but they don't know exactly what we're feeling. Will we ever be able to have other children or will we be so busy with Caden that we can't?? (We now also have Avery Sue, 2 years old and completely "typical".) How is Caden going to be...mild, moderate, severe?? When will I learn to accept this and not feel angry and hurt and guilty all at the same time??

Caden is doing great. He is 6 and a half weeks right now, and the absolute love of our lives. Completely spoiled, held all the time, sleeps in bed with mommy and daddy...we love it. He smiles all the time and started cooing a week ago. He has a VSD, but his doctors are pretty sure the small holes in his heart will close on their own without surgery. We simply can't get enough of him. He doesn't cry...just kind of makes weird crying noises. A very low cry. He's exclusively breastfed and does extremely well with that. He's on Zantac for his reflux and seems much more content. He was 6lbs 4oz at birth and is now up to 6 lbs 3oz (he went down to 5lbs 15oz in the hospital). It's nice to finally have a "reason" why he's not gaining weight...he has RTS. He's happy and beautiful and lights up our lives.


It's quite a blast from the past to read that...so many of the unknows are still unknown, but I don't worry so much about them. Caden will be who he's going to be! I do remember feeling SO OVERWHELMED as a first-time mom, and THEN special needs added to the mix. It was a rush. Our family is now much more laid-back and we appreciate all the "little things" others can so easily take forgranted - first smiles, first steps, first words, etc. Caden can certainly be hard to deal with at times, but couldn't we say that about a lot of 4 year olds? ;)

I learned of this poem a few weeks after Caden was diagnosed with RTS. I have never found anything that so perfectly describes the feelings that are such a part of having a child with special needs. Enjoy.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. - Emily Pearl Kingsley