Henry-WilliamsSyndrome

I think your baby boy has…

No parents want to hear those words. You are in the hospital for other reasons to do with your 8 month old boy and as you are sitting in the waiting room you notice a Doctor looking your way. He keeps looking at your baby and you know deep inside he sees something.

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My sister, Lisa, is one of the strongest people I have ever met. She moved away from home to Seattle when I was 13 years old and pretty much never returned! At Bible College, she met and married an amazing guy. Brian & Lisa currently reside just outside Seattle and are the parents to 3 amazing boys (I am biased! But they are!) Lisa has this amazing ability to push through tough situations, she is not a “woe is me” person, but once given the facts she will start walking forward. Her heart is loving and kind and her will and determination strong. A good mix! And she also has a ton of sass!

Brian and Lisa married in 1996 and found out they were pregnant one year into their marriage. 9 weeks later she miscarried. 6 months later they found out they were pregnant again, 9 weeks later she miscarried. Her doctor said if this happened a 3rd time she would need to do some testing to see what the issue was. Of course Lisa dealt with all the emotions during this time, the excitement and then the sadness. They didn’t make an actual decision not to get pregnant again; it was just the unspoken course they took. They were both schoolteachers at the time and really enjoyed being around the children they taught and also their friends’ families. They focused on other things in their lives; travel, moving to Maine, hobbies, etc. In 2006, Lisa found out she was pregnant! Lisa’s doctor decided to supplement this pregnancy with progesterone due to the history of the miscarriages. Well it worked! At 37 weeks on November 11th, 2006, the sweet Henry Olson was born! He was 6lbs 11oz and was healthy. The only thing the doctors noticed was his heart was making a “swooshing” sound, but that was quite normal and would disappear with time.

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The next week was an exhausting, emotional week for them as Henry’s jaundice levels were high. He spent 3 days in the hospital under the lights. It wasn’t a peaceful time for any of them as all Henry wanted was to be swaddled but they were unable to do this for him. It turned out to be Lisa’s breast milk that was causing the jaundice and soon his levels began to decrease. They noticed that Henry had a hard time latching on while feeding, later they would find out it was due to low muscle tone. So one can imagine (or know, if a mother), it would be a difficult, exhausting time, as feeding needed to happen every 2 hours.

At 6 weeks, Lisa was changing Henry’s diaper and noticed a hernia in his lower abdomen. Her doctor advised her that surgery was needed right away and an appointment was scheduled at Swedish Hospital in Seattle. Henry had surgery and they found another hernia on the other side of his abdomen. (Again, due to low muscle tone) They went back for their post-op appointment and the Doctor was not comfortable with the fact that Henry’s heart was still making the “swooshing” sound as it should have disappeared by now. Later, they would come to learn that Henry should never have been put under anesthesia when having his hernia surgery, because in fact his heart was working overtime and the “swooshing” sound was not normal.

Henry was referred to a cardiologist, who was the best of the best! The cardiologist needed to determine if his heart had SAS, Supravalvular Aortic Stenosis, a narrowing of the heart muscles. Brian and Lisa were asked to monitor certain characteristics over the next few months and they would go back for a second appointment to see if Henry’s heart muscles would open up or collapse in on each other.

During this time Lisa started to notice Henry’s facial features more. He didn’t take on the “Olson look” or the “Jones look”, but his features were a bit different. He didn’t smile for a very long time (Again, low muscle tone). As any new mother, Lisa followed the book where it told you the developmental goals every week for your baby, well she ended up throwing it out because Henry was not meeting any of those goals. She would go for his weekly check ups and she would have to fill out the questionnaire form where it asks you if “he is sitting up”, this would be so frustrating for her because Henry wasn’t sitting up on his own. Her doctor told her to pass on the questionnaires. The good news was that Henry was gaining weight and growing!

Soon people that would see Henry would notice the difference in his facial features and would comment that he looked like an elf. They were very sweet with these comments. Brian and Lisa knew that it wasn’t just them that saw the difference. Lisa knew something was different with Henry. She didn’t have the answers, didn’t know what it was and didn’t have the diagnosis that would soon be coming. Because of who Lisa is, knowledge is a good thing and she wanted to know so she could give her child the best help he needed. Something was different.

When Henry was 8 months old they went back for another checkup with the cardiologist. The 3 of them were sitting in the waiting room and another doctor kept looking over at them, but more so at Henry. Lisa said to Brian, “Why does he keep looking at us?’ They went into their appointment and got wonderful news that Henry’s heart was improving and becoming stronger. They would still need to monitor it though. The news was wonderful for them! Their doctor said, “I want to share something with you that my colleague just shared with me.” Lisa’s heart sank; she knew he was referring to the doctor in the waiting room that kept on looking at them. “He saw you in the waiting room. Heart doctors just don’t deal with hearts; we deal with a lot more as heart issues go hand in hand with other issues. Henry has facial features of children we commonly see with the exact same heart issue he has, Supravalvular Aortic Stenosis (SAS). I want to present something to you that you will want to take back to your doctor and in time you may want to see a Geneticist.” They then heard him say, “I think your son may have Williams Syndrome.” The phrase, “Williams Syndrome” was something they had never heard of. He advised them not to go home and search it on the computer but to go to a certain webpage that would give them the truth about this Syndrome. The drive home was emotional and they talked a lot, however, “investigation mode” was on. My sister reminds me of Nancy Drew, she is always on the search to find out things and if you ever need to know anything, ask her!!

When they arrived home they went on their computer, went to the website he recommended and instantly they saw children who held the same facial features as Henry. He had the same puffiness above the eyes, the little chin, the elongated skin between the nose and the upper lip, and he even had what the website referred to as the “elfin look”. He had the other characteristics: jaundice, hernias, heart issues, low muscle tone (not latching on while breastfeeding, not able to smile for a long time, holding his head up).

They spoke with their family doctor and proceeded to go ahead with the FISH test, a test that determines the status of a person’s chromosomes. During this time Brian & Lisa were proactive, they enrolled Henry in a program that helps children with developmental issues, had a speech therapist come to their home to help with breast feeding which would later help with his speech, arranged an occupational & physical therapist appointments. The whole time Brian & Lisa are both working! Life was busy; emotions were full!

Henry was 1 years old when the appointment with the Geneticist was made. When there, they collected both Brian and Lisa’s family history and the Geneticist examined Henry. “He was a kind man. They have such intense jobs as they have to give families intense information that could change the course of their world.” And he was about to do just that for my sister and brother-in-law. With a deep breath he said, “I am 99.9% sure Henry has Williams Syndrome. I still need to do a blood test to determine it.” They walked to their vehicle, Brian sat in the driver’s seat and Lisa sat in the back seat to feed Henry. She started to cry. She cried like she had never cried before. “It felt like grief, not sadness, but grief. It felt like something had died, yet I was holding Henry and he was happy and eating. The healthy child that I assumed I was going to have, I was told just died and I was told what I really did have. Our lives would be forever different, not horrible, just different.” Brian sat in the front seat and all he could do was pray for Lisa. They couldn’t believe the emotion they were experiencing. The next day, Lisa hit the ground running. What could she do to make Henry’s life succeed? What support did she need and require? They would later receive a letter in the mail confirming that Henry did indeed have Williams Syndrome.

The “Woe Is Me” factor, did Lisa ever have it? “No, because in relation to the special needs community, our family has it easy. I don’t have a child that needs a nurse, that can’t eat, that needs help breathing, that needs to be pushed around. I have never honestly felt woe is me because once you get in that world you see all the different levels of special needs. On the other hand, being in the church community that I was in was difficult. There were no ‘different’ children; none had needs. Going to the “Moms Group” in the church was hard because I was always the only one that had the child with special needs. The “things” that overwhelmed them sometimes annoyed me; but I felt comfortable in my friendships with them to help them put things into perspective. That church setting was difficult.” At the library, during Story Time, Lisa would have to sit with Henry in the circle while other children his age would be walking around and sitting on their own. His peers were moving a lot and talking, but he wasn’t. She thought she could stay at home because it was too difficult to be in those settings, hide from the girls she saw in town that were pregnant the same time she was and stop herself from seeing their children grow, OR she could expose Henry to everything that any other child would be exposed to (story time, moms groups etc). She did feel disconnected at times with certain people, as they didn’t know how to interact with her. However, Lisa always created a comfortable atmosphere for them to be in.

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Brian & Lisa have had to be witness to Henry enduring ignorance and bullying from other’s. The first experience was with a pre-school teacher! They have had to watch him be left out at the playground, the looks and stares from others, parents and children. They have had to hear children say, “Why does he still have diapers on?” or “What is he even saying?” Lisa wonders, “I don’t know if parents are teaching their kids to be like that or they’re mimicking their parents, but it’s like little kids are speaking like big snotty adults.” Sad. To this day, Henry has never been invited to a birthday party or a play date. Only when his 2 younger brothers came along did he get invited out. Their biggest fear is that they cannot control what happens to Henry when they are not around, when he is at the park or at school. Their fear is that he won’t be able to tell them when someone is mean to him or may do something that would hurt him because of his cognitive development. They are unable to control the way others are around him when they are not there. A burden that is hard for me to even type.

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On the other hand, they have experienced the kindness of those in their lives and also the stranger in the grocery store or on the street. Henry is not like other children; he doesn’t understand what a “stranger” is, therefore he always says “Hi” to everyone and asks them “How is your day?” He makes eye contact with everyone and usually gives them a compliment. One lady told Lisa, “No one every says hello to me, except your son did.” When I visit and go to the stores with them, everyone knows Henry. I feel like I am walking around with a celebrity! I know Brian and Lisa are so thankful for those that have walked with them from the beginning to today. There is so much love that has been shown them and Henry. They have even had people say to them that they want their children to befriend more children with special needs; they don’t want to be the ignorant family. Those are pleasant words to hear.

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I could write on and on about this story that they are walking out. I believe I have only scratched the surface. The emotions, questions, endurance could not be transcribed onto paper for you to fully capture. Having tea with Brian and Lisa and doing life with them would probably give you a glimpse into their world.

Today Henry is 8 years old. He is the older brother to Oliver and Simon (both do not have Williams Syndrome). He started walking when he was 3 years old and started talking more when Oliver started talking (who talks a lot!). He loves music and singing (A characteristic of WS). He can hold a note more than any other child I have met. He is the most friendliest, outgoing boy (A characteristic of WS). He is also a pest to his brothers, which is expected of any older sibling! He has a great memory and often asks me of people he has only met a few times. He remembers! He has gone to pre-school, school and homeschool. They are still on the path of finding out what works best for him. He continues to go to all his therapy (Physical, Occupational, Speech) sessions and he is succeeding! He still is learning to balance and his muscles still deal with rigidity. His fine motor skills are doing well but still improving. Speech and language are also improving. Mentally, he is still developing and learning. I love him so much! Oh and his heart has been given a clean bill of health, he won’t ever have to have his heart checked out again!!!

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God gave Henry the best parents. They have the combination of balance, patience, feistiness, protection, discipline, freedom, instruction, humor, kindness and love. Their faith is constant and the foundation of their home. Yes I am bragging about them, but I have seen their journey and one should boast about those who are walking the journey out well. They are so honest with the challenges they face parenting a child with special needs; it has been difficult. However, the joy that Henry brings to their lives outweighs anything. 
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If I can speak on their behalf, “Teach your children, even yourself, the way of kindness to those that we don’t understand right away. Teach them that those who appear different or act different are in fact just people who have been given a different mandate in life. Teach them understanding, teach them acceptance but most of all teach them and SHOW them kindness. If you yourself do not show kindness and love to those who are “different”, then how do you expect your children to?”

I love Henry. I am thankful for all that he has taught me. For when he stops to say hello to the stranger, I then have to stop to say hello to the person that sometimes never gets a “hello”. 

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Henry’s mandate in life? Perhaps to bring joy to someone’s day. We have much to learn from him and his parents.

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Please visit www.williams-syndrome.org to find out more information about this syndrome. You can also watch this short, informative video: