Welcome

Welcome to our blog. Our purpose is to keep family and friends updated regarding our family, and especially regarding our sweet baby Lauren.

Lauren was born with Williams Syndrome. Williams Syndrome is a small deletion of genetic material on chromosome #7. It happens randomly, occuring in around 1 in 7,500 births. So it's very rare and most people have never heard of it, including lots of doctors. People with WS have many similar problems and characteristics. Here are some of the main ones:

Characteristic facial appearance
Cardiovascular problems
Learning Disabilities
Hypercalcemia (elevated blood calcium levels)
Feeding problems
Dental abnormalities
Kidney abnormalities
Hernias
Hyperacusis (sensitive hearing)
Musculoskeletal problems
Excessively social personality
Developmental delays
Attention Deficit
Marked gross and fine motor difficulties
Marked visuo-spatial difficulties


How WS affects people can vary greatly. Lauren won't have every problem, but she will need lots of care throughout her life. So far, we are very fortunate that Lauren is doing very well. She does have moderate pulmonary stenosis, which is a narrowing in her heart that may require open heart surgery. This is very common in people with WS. She also receives physical therapy and occupational therapy twice a week. Her gross and fine motor skills are showing improvement.

I guess the good news is that people with WS tend to be very happy and friendly, but because they are "different," they have trouble having true friends, and I worry about her being teased and being lonely. She will most likely not marry, have kids, home, career-all the things a parent dreams their kids will be able to have. She will probably not be able to live independently, although some can work and live alone, but with support and supervision.

Tuesday, December 2, 2008

8 Days in Hell

Well, my poor little baby's luck finally ran out. All this time, we felt so fortunate that Lauren has had so few medical and other problems since her diagnosis with Williams Syndrome. We finally had a crisis last week that made me that much more grateful that she is usually quite healthy.

It started Friday, the week before Thanksgiving. She began vomiting in the morning, and it lasted all day, without her ever even wanting a sip of water. I knew she was dehydrated by that time, so we headed to the ER at Genesys Hospital in Grand Blanc for some IV fluids, thinking she would be fine and able to come home by morning. Well, she didn't improve, so they admitted her to run more tests, find out if there was an infection, and continue the IV fluids. She had tested positive for Strep throat, but since she was still vomiting up to 30 times per day, they started to think something else was going on. By Sunday, she wasn't perking up, and was still vomiting, and they weren't able to diagnose her other than the strep. Then she had a very scary, very bloody diaper when she passed some stool. The doctor assured me it was just an infection, not to worry, but it would take 24 hours to run cultures to find out what infection was causing it. I asked if she needed an xray or ultrasound to see if something more serious was happening that required surgery, but I was told, "No, it's nothing surgical, just either stress from being sick, or an infection that will take 24 hours to diagnose." That night, her discomfort increased, while the vomiting continued, and I was starting to get really scared that she wasn't being properly diagnosed. She was in so much pain by this time that she was writhing, rolling around, trying to get comfortable, and begging me to help her. It was excruciating for her, and almost as excruciating for me to watch. I was so upset, in the middle of the night, twice I brought Lauren out to the nurses, asking, "Please, isn't there something you can do? Is there something else you can give her for pain?" They practically ignored my cries for help, saying, "Sorry, all we have on order for her is Tylenol." Finally, morning came, and as soon as the doctor got there and realized how much pain she was in, and after another horribly bloody diaper, she was able to diagnose her correctly. She had an intussusception-an area in her small intestine that was sliding into itself, like a telescope. They said it was probably from the strep infection causing enlarged lymph nodes in the bowel. They tried twice to use a barium enema to "blow it out," but it was unsuccessful. They said surgery was necessary, and the xray definitely showed an intussusception. If they had listened to me earlier when I asked about an xray, she would have been diagnosed a lot sooner, and it would have spared her a lot of pain.

So they were going to do the surgery, and as per procedure, we were having a consult with the anesthesiologist just prior. He said, "I will be the one to be honest with you. You don't want your daughter to have this surgery here." Wow, thank God for his honesty. It turns out this hospital had no specialists, no pediatric radiologist (who should have done the barium enema), no pediatric surgeon, and no pediatric ICU in case something went wrong, which was possible considering she has a heart condition. So they sent us back upstairs, to try to figure out what to do with us. Thankfully, they had given Lauren morphine, so she was a little more comfortable, but we were desperate for her to get the surgery over with, so the intussusception didn't become life-threatening. So they called the one hospital nearby that they knew should have a pediatric surgeon, only to find out he retired and has not yet been replaced. Then we had to wait over two hours for the University of Michigan to let us know if they had a bed for her. They never were able to give us an answer, so the doctors didn't know what to do.

During all this time, I had been in touch with Lauren's pediatrician, Dr. Martin Levinson, on the side, because he was not a physician at the hospital where I took Lauren. I just took her to the closest hospital, thinking all she would need was IV fluids. Well, as soon as they wanted to admit her, I should have packed up and left for Beaumont Hospital in Royal Oak. Then Dr. Levinson could have cared for her, and they are a full-service specialty hospital. I had been keeping Dr. Levinson in the loop, because he is WS-knowledgable, and I didn't want her misdiagnosed due to her WS. Let me take a moment to praise Dr. Levinson! He gave me his personal cell phone number, and told me I was welcome to give it to anyone caring for Lauren. And as soon as I told him they didn't know what to do with Lauren, he said "Let me call a pediatric surgeon I know and I'll call you right back." Well, he had it set up so fast at Beaumont, I can't tell you the relief we felt.

They had to transfer us by ambulance, and poor Lauren was so listless, it was heartbreaking. She just lay against me, whimpering, the 45 minutes it took us to get to Beaumont. But once we were there, though we were afraid for her to have surgery, we knew she was in good hands. They were so wonderful and reassuring, and you could tell they knew what they were doing, and not just trying to figure it out like at Genesys. Her surgeon was Dr. Winston Chan, and he was so kind and confident. We were just sobbing, and he said,"Don't worry, I know what I am doing, and she will be fine."

And she was. It took her a couple of days before she started to perk up, which was a long time to wait and still worry. But on Thanksgiving day (how appropriate), she was able to finally smile, and play a little. I was so relieved! Then, after a full week of no eating or drinking, she started to act hungry. We had to start slow, but she didn't want to! She ate a whole single-serving box of Cheerios. We were able to take her home Friday, the day after Thanksgiving. She is a little thinner, a bit sore, and looks a bit like she has been sick, but otherwise she is just great, and is so happy to be home!

We got the pathology report back from the bowel resection, and it turns out the intussusception was caused by something called a Meckel's diverticulum. It's a bit of tissue that's a remnant of when she was an embryo, when the umbilical cord was attached to the small intestine. Usually the tissue goes away as you develop into a fetus, but in two percent of people, it remains, and in two percent of those people, it causes problems, so it's quite rare, though not unheard-of. When the bowel senses there is something there, usually sometime before the child turns two, it tries to pass it through, but since it is tissue that is still attached, it causes intussusception. So technically it is not WS-related, though our kids tend to have kinks and quirks, so I can't help but wonder if having WS made her more likely to be susceptible to this kind of thing. I guess we'll never know.

So, though it was a terrible Thanksgiving, we still have so much to be thankful for. Little Lauren is recovering well, we now know to never take our kids to Genesys hospital, and we are so thankful to have such a wonderful pediatrician like Dr. Levinson. Now we look forward to having a wonderful Christmas...

23 comments:

Nancy said...

I was tense reading this entire post! I am so happy it turned out the way it did but so sorry you had to go through all of the worry! I can't imagine!

Katie said...

Oh geeze, what a horrible time for you all. Thank goodness that Lauren is feeling better now. Your Paediatrician sounds fantastic, i am so glad he was there to support you.
Take care

Julie said...

I am so sorry she had to go through that. Glad all ended well.

Laura said...

What a nightmare for you all. I'm glad she's feeling better.

Amy said...

So glad you finally got some results, answers, and that Lauren is healing nicely.
Hugs,
Amy

Tara said...

Oh my goodness! I'm so glad she's ok! I hope things are seeming back to normal - and hoping for a healthier Christmas :)

Dawn Low said...

Just looking at the pictures of her before surgery made me want to cry. I am glad that she is better now. And thank God for honest medical professionals who will tell you that you should go somewhere else for a proceedure.

Noel said...

I am so glad that Lauren is back home feeling better. Reading your post made me get all nervous too.
Sending you thoughts and prayers.

Guanogirl said...

Wow , sounds like you had a rough week. Glad to hear that Lauren is home and feeling better. Good call Mom to take her to the hospital right away. Wishing you a peaceful holiday season
Robin

Ava's Grandma Kim said...

I am so sorry that poor Lauren was so ill! I remember only too well those crazy hospital days when you just wish someone, anyone, could help your poor baby. It's very hard to keep it together, isn't it?

Hang in there. I'll be thinking of you:)

Ava Jewel Leilani said...

Oh I am so sorry you all had to endure that. I am glad you are all home now. What a difference in the photos, the last one is great, I just love her smile! Hope you all are getting some much needed rest.

Teresa and Shawn said...

I just found your blog (and your girls are gorgeous!). Oh my goodness, what a horrible experience! I am glad to hear Lauren is recovered. She is such a doll!

Mercedes said...

I remember! I remember, I remember, I remember. Rushing to the hospital, and nobody being able to figure out what is going on. It broke my heart to read this. I'm so glad that things worked out.

My son just turned six, and our doctor's visits are few and far between. It gets so much better. Things settle down and it becomes bearable.

Your girls are absolutely stunning!

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The Wheats said...

Hi, I stumbled across your blog while researching WS. My 2 year old daughter was just diagnosed this past Tuesday and we are trying to learn as much as possible about it. Unfortunately we are very limited to the internet as a lot of the specialists won't answer any of our questions until we are "officially" seen by them (our appt. is months away). If you wouldn't mind sending me any info on clinics or dr.s we would be SO appreciative. Getting the information from a parent who has been there is so much more reassuring. The past five days have been an emotional rollercoaster. My email is esteele5001@yahoo.com Thanks so much!

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About Me

My photo
Jerry and I have three daughters: Katelyn is 6, and in the 1st grade. She is in her 5th year of ballet. Kristen is 4, in pre-school, and switched from ballet to gymnastics and loves it! Lauren turned 2 years old on January 8, 2008. We live in Holly, Michigan.

DONATIONS ACCEPTED, NEVER EXPECTED, ALWAYS APPRECIATED

Lauren's extended family has graciously created a mutual fund for Lauren's future. We will care for Lauren as long as possible, but inevitably there will come a time when we are gone. We never want anyone to feel obligated to help Lauren, but there are many people who like to make donations to various causes, and would like to be able to help someone they know. Please know all donations are immediately deposited directly to Lauren's fund, and will only be used for her needs once we can no longer care for her. Donations can be made in any amount, at any time, by anyone, to the following address:

Edward Jones Investments
P.O. Box 395
New Baltimore, MI 48047-0395

Checks can be made payable to Edward Jones Investments with a note indicating it is for the Lauren Stark Fund. Questions can be answered by our Edward Jones Investments Representative, Pat Dorcey, at 586-725-6445, or
post a message and we will get back with you promptly.