wolfhirschhorn.org

Hi everyone.  I have been so thankful since finding this site a few months ago.  When our son was diagnosed with   WHS, I could find nothing on the internet but all the “syndrome” stuff that scared you to death!! This is a wonderful place that parents can come and feel supported.  I want to start by sharing that our special little boy with WHS went to be with Jesus after 5 ½ short years. He was born Nov 26, 2005 and died April 20, 2011. His name was Brett Alan, and he was one of the greatest joys of our lives.  We miss his sweet presence in our home every day.  Sometimes I think that I hear his pump beeper going off…sometimes I think I hear some of the noises he used to make.  But….he is not here, but he waits for us now in Heaven, and he is a perfect little angel….and now Brett’s story.

We had 4 children ages 15, 11, 8 and 18mo. when I found out we were going to have another baby.  Interestingly, a few months previous to finding out we were “expecting”, we made the decision to follow a “calling” and go work on the mission field in Haiti.   The plan was to leave in late June 2005 and return 3 months later, and the baby would come in 6 weeks or so weeks after that. Then after recovering for a few weeks, we’d be back to Haiti with 5 children!  When we returned in September, my midwife took one look at me and said, “Val, you must have your dates wrong.  You do not look big enough for 33 weeks gestation.”  I said to her that I knew my dates were correct, and so we chalked it up to Haiti and the stresses of all the “changes” in my life.  Time went on and each visit we found that baby did not want to keep his head down.  Julie would turn baby, and I would try all the tricks of the trade, but every visit baby had turned himself breech.  I passed my due date, and about a week or so later, my midwife suggested that we go do an ultrasound.  After one of those long tests where they test everything, they told us that my amniotic fluid levels were not normal.  They suggested in a week we do another test.  At 2 weeks over, Brett was around 4lbs.  In the meantime, Julie suggested that I find a doctor who would “take me on”, although we were very late in the game!  We found an OBGYN who was willing to take a look at our ultrasounds and after ordering 2 more, decided it was time to take baby.  The fluid levels kept on dropping.  Going into the birth he told us that baby could just be small from a placenta that did not do its job, or baby contracted a virus that inhibited his growth, or baby could have some genetic problems.  It was amazing how the Lord kept us calm through the whole thing.  We had been on somewhat of an emotional roller coaster since we found that the fluid levels were low…which usually signaled “something” was not right.  But we trusted the Lord and stayed strong.

November 26, 2005 was the day when we scheduled the C-section.  When Brett was taken from my womb, I heard him cry and my thought was that everything is going to be ok.  My husband and I were chatting as the doctor was doing the final work, and suddenly the pediatrician rushed into the room and began sharing with us that our son had many problems:  cleft lip, cleft palate, collapsed lung, low birth weight, small veins, and the list went on.  I saw Brett for a few minutes before the closest children’s hospital arrived and took Brett 3 hours away to put him into the NICU.  We clung to each other, our families, our friends, and our Lord.

Brett at one week old

Two days later my husband and I went to see Brett.  Brett was on oxygen and was hooked to several monitors.  I could not get over how small he was, and how small his head was.  We had that meeting with the genetics people who shared with us that they believe Brett was born with one of two different syndromes, both of which we had never heard of before.  Two days later he was officially diagnosed with WHS.  We cried.  We shared the news with family and friends.  We wondered how we do this.  We felt so unprepared.  But we had to go on.  My husband’s sister came and visited the NICU.  She reminded us that God does not make mistakes.  Brett is here for a reason.  We found much comfort in her words.

We left the NICU after 6 days, returning to our home with a baby that would require about 5 surgeries before we could return to Haiti.  We would nasal tube feed him until he was about 9 months, (after that he’d have a surgery to have a g-tube put in) and he’d need oxygen for maybe 1 month.  I’ll be honest….it all looked hard and overwhelming.  There were sleep tests, and visits back to Riley Children’s Hospital to see all of the doctors he’d need to make it through the first year.   And then…there was always the threat of seizures.  Our church, our family and our friends surrounded us with prayer and love, and we took one day at a time.  Life fell into a routine once more.

Brett began to grow and we soon found that we had one of the happiest kids on earth in our home.  He rarely cried.  He smiled a lot.  He started to roll around, pick up toys, and at times even seem to focus on them.  Yes the progress was slow, but there was progress.  For the most part he did not enjoy PT, but we pushed him and always enjoyed the way he crinkled up his nose when he had enough! We hoped he’d sit by the end of his first year, but he didn’t.  We kept on, not losing HOPE.

After surgeries in February, May and September, and all major health issues addressed, we were ready to return to Haiti.  Our missionary friends and Haitian helpers were excited to meet Brett and gave us a hearty welcome.  About 3 weeks after our arrival in Haiti, Brett briefly stopped breathing.  We rushed him to our local clinic and decided that he possibly had his first seizure.  The doctor choose phenobarbital to control future seizures, and we also started him on a round of antibiotics. (He had a cold at the time)  Two days later Brett awoke with a terrible rash and a rising fever.  Back to the clinic we went this time taking him off all meds (since we were not sure what caused the rash) and starting him on steroids to reduce the swelling and rash.  My 16 year-old daughter (who loved him dearly) slept the night at the clinic with him.  Thankfully the steroids worked and back home they came the next day.  In the meantime Brett is rolling all over the place and beginning to play with his toes, chew on his fingers, working harder at PT.

But about 3 weeks later after doing a church service in our home, one of us observed that Brett’s eyes seemed to be locked.  We all got down on the floor and stared at him, noticing that his right eye was twitching.  Next it was his arm, then leg.  Soon it was his whole body.  Back to the clinic we went to find meds for what we knew was a seizure.  After one hour, the seizure intensified.  We were able to get some meds into him, but were unable to use valium which would stop the seizure more rapidly because if Brett became too relaxed, we had no way to revive him.  Long story short, we watched him in a seizure for 8 hours!! How thankful we were when it stopped, and how sorry we felt that he had suffered so long.  He slept hard for several days.  After this, we began him again on Phenobarbital which worked well for Brett, as long as we kept increasing his dose according to his weight.

After this Brett lost control in his right hand, and his already weak right side became weaker.  We continued PT and saw improvements, but he still was not sitting on his own when he died at 5 ½.  Brett spent most of his days between sitting on the porch in his wheelchair, or in the house on the living room floor or in his bumbo.  He loved the noisy Christmas paper at Christmas, his baths, and feeling and watching his brothers wrestle around on the floor beside him. (We had our last boy in April 2007)  We took Brett to church, to restaurants, to the beach, on 4-wheeler rides, etc.  He was a part of us!  We had a friend who lived next door who was working at a local mission.  Often she’d come over and ask to have some “Brett time” where she’d lay on the floor with him and share her troubles.  He’d always listen, never share secrets, and she’d go away feeling relieved of the stresses she came with.  Our oldest daughter moved to Colorado when Brett was 4, and a few months before he died she sent him a letter.  I’d like to share that now.

Dearest Brett,                                                                                                                                    January 29, 2011

Hey Buddy! It’s Tess! How are you doing? Is your tooth feeling better? You are so brave! I am so proud of you!

The reason I’m writing today is because I miss you so much! I’m happy to announce that, B, your pudgy little fingers have a firm hold around my heart – a hold that will last as long as I live – and into eternity! B, I really don’t know what I would do without you! Nobody cuddles with me the way you do! And who would I tell all my secrets to?!? (I have lots more to tell you the next time I see you. J)

Little brother, you inspire me. To what, you ask? To contentment. To bravery. To pure, immovable joy. To love. To giving. To working hard. To listening more to others. To being selfless. You, Brett, are all of these things. You have also taught me to keep my sights on heaven – where all things will become new. Thanks B-Bop for teaching me!

Oh, what I wouldn’t give to be able to hold you right now! To tickle you, to make you laugh, to play with you, and cuddle. Mom, Dad, and the rest of our family doesn’t know how good they’ve got it – to be able to live with you! Save some love’n, secret storage, and smiles for me – for the next time I get to see you! I love you so much Brett- More than you’ll ever be able to know! Maybe sometimes you can come stay with Dan and me for a while! Stay amazing!

Love, Tess (Your sis)

One day after his 5^th birthday, I noticed a small “whitehead” looking pimple inside the bottom of his nose.  I decided not to touch (less risk of it opening and getting infected) it thinking it would just go away.  My younger daughter returned to Haiti after staying longer in the US than the rest of us, and after observing it the next day told me that what I thought was a pimple, was actually a tooth.  Quickly finding a metal spoon I touched it against the white spot, and sure enough it was hard.  Then it made sense.  Some of the gum tissue was pushed up through the nostril.  By the way, Brett’s teeth were a mess.  Many did not come in at all, and many were very crooked.  He did not like anything in his mouth, so brushing was a disaster!   Later that month the surgeon from the US came to our clinic.  He said he could numb things up and pull out the tooth.  My hubby went with Brett, and a friend and I waited outside.  It did not take long, but I heard him whimpering when he came out.  I took him from my husband and Brett started immediately stroking my neck.   It was so cool…in his own way he was telling me he needed me.  We left Brett for 3 days in March 2011 and attended a Missionary Retreat with our friends.  Thankfully we had a couple of wonderful care-givers who took excellent care of Brett.  When we returned home, I lay down beside him on the floor and he rolled over, faced me and then kept putting his hand on my face as he rolled from side to side.  It was heart-warming!  Although he never spoke or had the ability to reason like a normal child, we believe that Brett knew us, and that he recognized our voices and loved having us all back “home again”!

As you read this you may wonder how severe was Brett?  As I read through many of your posts, I believe that Brett was on the severe side.  At 5 ½ he was completely g-tube fed, did not sit, and did not talk and his only movement was by rolling.  When playing with a toy he’d pick it up, move it back and forth in the air, drop it, and start all over again.  He showed emotion, but not emotions like fear of being separated from us, or fear of the dark, or a fear of loud noise.  He seemed to like music, and if we had a kitten or a small animal around, he would for sure know that something was moving and different, and he seemed to like it.  Before his seizures started we put a baby chick on his lap and he followed it with his eyes, and tried catching it as it moved over his shoulder.  It was so funny to watch.

Brett’s death was very unexpected.  We did not know of any health issues.  I remember the pediatrician at Riley telling us that because of his weak immune system that he would be vulnerable to pneumonia.  The night before he died, I remember him smiling and playing with his toys in his bumbo chair.  My sister-in-law was with us in Haiti at the time, and we were commenting on how when he dropped a toy, without really looking at it, he knew where it was because he’d bend way over with his left hand toward his weak right side to find it.  In the morning when I went to check his feeding pump and see if he was awake, I found him gone.  It will always be a mystery.  All that I know is that God answered one of my prayers which was that when it came Brett’s time to die that he would not have to suffer.  I am still amazed at how God so peacefully took him.  He looked like he slept his way into eternity.

Brett March 2011

Now that Brett’s journey is over, we think about the purpose of those 5 ½ years.  Some would call him a mistake or a genetic mishap.  We know different.  God allows these wonderful children to come into the world to remind us of innocence…  to remind us to love with pure hearts.  (Brett never had an evil motive in his life)  ….to remind us that forgiveness and caring for one another should be big priorities…to remind us that serving one another is a wonderful blessing.  I believe that disabled children are God’s reminders that although we live in an imperfect world, there is a perfect world waiting for all those who will claim His Son as Lord and Savior.  We will see Brett again, and he will walk and talk.  It lifts my heart to think of him in Heaven, communicating with my Grandma who cared so much about him.

There is so much more I could write, but I know this is getting long.  I know and understand the emotions that each one of you with your special WHS child is going through.  WHS kids are such joys and the care is not huge, but sometimes the future looks hard.  When Brett died, he was 40lbs.  I often wondered how I would bathe him when he became 10lbs. heavier.  How would I lift him from his bed?  I hope each one of you has a great support group like we did, filled with family and great friends who loved and prayed for us through each phase.  I met so many wonderful people through Brett’s short life.  Each person who reached out to Brett in some small way…I’ll never forget.  I pray our kids will be changed forever, and that compassion and love for those who are “different” will be a part of their lives.  We miss our little Brett. We miss his pudgy little hands and his beautiful big blue eyes.   As I said before, his presence in our home so was sweet and peaceful.  But, as with any tragedy, life must go on.  We are thankful to have been asked to care for one of God’s WHS kids.  It was a privilege, a calling, and a blessing.  Please feel free to email me personally with any questions about Brett, or just advice with your little blessing.  I’d love to help!  val@sugardog.com Thanks for letting me share.  It is part of the healing!  I will close with the poem our daughter wrote after he died.

When you first came to us, so frail and small,

I was timid to hold you with tubes and wires and all.

Though I didn’t understand then what God would do,

With a precious little handicapped brother like you;

It is clearer now what God had in store;

You were an angel to us, and you gave us much more:

More, than we could have ever given to you.

You taught me bravery, with every painful surgery,

And how to press on and fight hard, with every round of therapy.

In those times we thought we were going to lose you,

You reminded me of heaven where we will rejoice with Him, made new!

And as I watched you minister and shed your love to others,

When you let the Haitians play with you or smiled at your brothers;

You showed me what it means to love unconditionally.

Contentment, joy, and love flowed from you, Brett,

And all the times I held you; those times I’ll never regret.

You listened to my worries, while we snuggled close,

In our lives you were a constant, often when I needed it most.

And now my little angel, your work on earth is through;

At five years old your task is done, and now heaven awaits you.

Our hearts will ache for you, sweet one, but we rejoice that we will see you soon!

-Your Sister, Tess