Archive | HPE RSS feed for this section

Reality of HoPE

22 Nov

I know that it can be uncomfortable to be my friend especially when I share updates on children who are sick or dying. My deepest desire is that no parent would face a life-threatening diagnosis for his/her child and none of my friends would experience the pain and heartbreak of saying goodbye to one’s child.

Can I tell you a little bit about Holoprosencephaly (HPE)? It is the most common brain malformation in a developing fetus. It occurs during days 17-21 of fetal development, and as a result, it often ends in early miscarriage. It is estimated that HPE occurs 1 in every 250 pregnancies, so if you experienced a miscarriage without an explanation of why, HPE could be the reason.

Did you know that the likelihood of a fetus with HPE surviving to birth is only 3%? Let me say that again…3%! Can you imagine the determination and will it must take to overcome those odds?

When one of our children with HPE passes away, it rocks our HPE community. We grieve for the parents, siblings and families, but I know we also celebrate the power and strength these children have had in the moments, hours, days and years that have made up the lifetimes they have known.

I will never be as strong and courageous as these little ones have been in their lives, but their examples push me to step outside of my comfort zone, to give of myself to others in sharing my journey from HPE to HoPE.

If you would like to know more about HPE or would like to help our cause, please visit http://www.FamiliesforHoPE.org. To learn more about my personal journey, visit http://www.SammyYammy.com.

IMG_0112.JPG

A Perfect “10”

20 Mar

On January 10, 2003, we received the diagnosis of Holoprosencephaly (HPE) for our unborn baby. The specialist described HPE as 10 times worse than Down Syndrome.

On April 10, 2003, Samuel Aaron Harley was born weighing 6 lbs., 10 oz.

If he were with us today, Sammy would be celebrating his 10th birthday on April 10.

If he had been born without HPE, Sammy would be living a typical 10 year-old boy’s life, and we would be patiently waiting to see what he might grow up to become and how the adult Sammy might make an impact on the future world.

Instead, Sammy was born with HPE, and before he even left the womb, he was already making an impact on the world. In the 5 years he was here with us, he melted hearts by his sweet innocence, and he taught others through his determination and perseverance.

In honor of Sammy’s 10th birthday, it seems only fitting to celebrate the number 10.

What you see below is the formation of a ripple that started with Sammy, and I would ask you to help his ripple grow on this 10th birthday. Sammy was one of the children who helped inspire the formation of Families for HoPE, Inc., and I will be participating in the annual Walking for Dreams fundraising walk on Sunday, May 19 at the Downtown Indianapolis Canal. 100% of the funds raised by my team directly benefits Families for HoPE.

The first ring around Sammy’s photo contains 10 circles and within those 10 circles are room for 10 names. I am seeking 10 friends who will donate $10 to join my team and walk with me in honor of Sammy. Then, I would like those 10 friends to get 10 of their friends to donate $10, and ask those friends to consider walking with us in honor of Sammy, too. (Below is a picture of what my 10 friends will receive to share with their 10 friends.) My goal is to completely fill Sammy’s ripple with names to create my “perfect 10“.

Now, imagine if those 10 friends asked 10 of their friends to donate $10 and they walked with us in honor of Sammy, too. Do you see the ripple forming?

The thing about Sammy is that he couldn’t participate in an event like this because HPE made him unable to walk. Also, Sammy couldn’t ask you to donate $10 and walk on his team because HPE made him unable to talk. He couldn’t walk or talk, yet he made quite an impact on the world.

Will you be a part of the ripple that Sammy started? Will you be one of my “perfect 10 friends?

1-Perfect 10 Ripples

If you would like to start your own ‘perfect 10″ ripple for Sammy, please email me at LeslieHarley527@gmail.com, and I will send you the file so that you can add your 10 friends and their 10 friends to the ripple.

20130320-110504.jpg

Oppositional Defiant Disorder?

1 Sep

In his life, Sammy didn’t listen very well, and he certainly had a knack for proving people wrong. I often described him as “consistently inconsistent”. It never failed that when I expected him to not tolerate something, he proved me wrong by loving it. When I expected him to like something or do well with an experience, he would pull out all stops to prove me wrong.

I remember one hospital stay in particular when the admitting nurse asked me what his daily routine was like. I told her about his sleeping patterns, what he enjoyed, what he didn’t like. Over the course of the hospital stay, he slept when I said he would be awake and was awake when I said he would be sleeping. “Uh, mom, are you sure he’s your child?”, the nurses would jokingly ask.

Sammy’s neurologist made rounds one afternoon, and as we talked about Sammy, I joked with him about Sammy always doing the opposite of what I said he would do. His doctor quipped with the humor you might expect of a neurologist, “I could diagnose him with Oppositional Defiant Disorder.”

Another label…ODD? Uh, no thanks.

20110901-023045.jpg

Carpe Diem

30 Sep

Carpe diem…seize the day…

When Sammy was only a few hours old, he showed signs of seizure activity. As the day continued, so did the seizures.

A prenatal ultrasound revealed to us that Sammy had HPE, and my research on the condition told me that infants and children with HPE are prone to seizures, among many other secondary conditions. Just the word “seizure” scared me, and I prayed fervently that Sammy wouldn’t have them.

After his birth, doctors ordered an MRI of Sammy’s brain, and those scans would reveal that Sammy’s severely malformed cortex made him susceptible to seizures that would be difficult to control with medications. It didn’t take long before we discovered just how difficult it would be.

Sammy began having seizures so soon after birth that I suspect he was probably having seizures while in the womb. Most of the seizures were short in duration, but the frequency of the seizures was disturbing. We would try to count the seizures, but often times, there were just too many to count, and we would lose track of the total.

Sammy had an excellent neurologist who was aggressive in treating the seizures and who was on the same page as we were (not to mention the fact that we were also all on each other’s speed dial). Through Sammy’s life, we tried different medications and multiple medications, but it seemed the seizures just kept coming.

As a parent, it was heartbreaking and distressing to watch our child’s body seize, and there was no way for us to stop it. I remember countless prayers begging God to calm the storms that were overtaking Sammy’s body for sometimes hours on end.

When Sammy was about 6 months old, I received some clarity on the subject. I was by myself in the car and I distinctly remember exactly where I was on the highway; I remember the time of day and the weather conditions in that moment. Although I never found myself questioning God about why Sammy was born with HPE, I did have another “why” question for Him. I remember reasoning with Him and saying, “Lord, I understand why he has the seizures. I understand that his brain didn’t form correctly in the very earliest days of his development, and I understand how his cortex is malformed. I understand why Sammy has seizures, but what I don’t understand, Lord, is why he has to have them. No matter how his brain developed or how the scans look, I know that You have the power and authority to take those seizures away, and I don’t understand why You haven’t.”

Immediately, He answered me. It wasn’t a voice I could hear with my ears, but my spirit heard it loud and clear. He said, “Seizures are a part of who Sammy is, and you must accept them. When he ceases to have seizures, Sammy will cease to exist.” It wasn’t the answer I was expecting or wanted, but God had spoken, and I understood.

From that point on, I still asked Him to calm the storms that wracked Sammy’s brain, and while we still continued to try medications to get better control over Sammy’s seizures for his overall quality of life, I had a different peace about them, and I no longer feared them. I still didn’t like them, but I understood them.

Over time, we would see Sammy go from 100+ seizures on a bad day to maybe only 25-30 seizures on a good day. I often prayed that Sammy would experience the love and presence of God during his seizures…that in those moments, he would know God. Over time, Sammy’s seizures would begin to change, and he typically had partial, focal seizures, not the tonic-clonic (grand mal) type of seizures. In time, he began to have seizures that many people didn’t even realize were seizures. The seizures would present as posturing to one side, rolling his eyes in that same direction, and his mouth would break out into a huge smile–the kind of smile where his eyes would disappear behind his chubby cheeks. Sometimes those big smiles turned into laughter, and I often wondered if in those times he was experiencing the Hand of God reaching down to tickle him.

I have never forgotten the explanation I heard that day in the car, and I often thanked the Lord that He made Sammy’s seizures to be “cute” seizures so that I could endure witnessing them day in and day out.

At the end of Sammy’s life, he developed sepsis and a respiratory illness that made him very sick and unstable. Even the act of changing his diaper or touching him caused him distress and made his vital signs drop. While hospitalized and on a ventilator, he had a very rapid respiration rate and was working too hard to breathe.  In order to allow his body to rest for healing, he was prescribed a paralytic medication that essentially paralyzed his body so that he would breathe with the ventilator and save his energy for healing.

The last time I saw his physical body have a seizure was a Sunday morning, and by the next afternoon, we knew that it was time to let him go to the Father. Later as I would reflect back to that day in the car and my conversation with the Lord, it was then when I realized that during the period of time from Sunday morning to Monday evening, we didn’t witness a single seizure for the first time in Sammy’s life.

“Seizures are a part of who Sammy is…When he ceases to have seizures, he will cease to exist.”

How’s this for a list?

29 Aug

I thought I’d share one of the hundreds of scrapbook pages I’ve created over the years.

When we received the diagnosis of Sammy’s HPE, we were given examples of the things that a child with HPE might never be able to do.  Some of them were easier to accept than others, but by far the hardest to hear was, “You need to be prepared to love a child who may never be able to show you love in return.”  That one cut to the core.

The first meeting I had with Sammy’s neurologist took place in my hospital room just two days following Sammy’s birth.  He came into my room, introduced himself, and he sat down to talk with me.  I can remember his exact words. . . “I’ve just come from evaluating your son and reading the scans of his brain.  As was expected from the prenatal ultrasound, I can confirm that he does have holoprosencephaly.  As a result of that diagnosis, I could give you a list of all of the things that your son will never be able to do; however, I don’t do that anymore.  I find that as soon as I say those things, these kids will prove me wrong; so, I’ve learned to just keep my mouth shut and let these kids show me what they are going to do.”  In that moment, I knew that this physician would be a great member of Sammy’s medical team.

I had done my homework, and I knew very well all of the many things that Sammy would never be able to do.  Being somewhat sarcastic at times, I decided one day to make a list of the things that Sammy would never be able to do compared to other “typical” children.  Here are a few of my favorites that I incorporated into a scrapbook page:

Say bad words
Tell lies
Play in the toilet
Put his fingers in light sockets
Eat from the dog’s bowl
Swallow pennies
Bully other kids
Put crayons in the dryer
Climb into the dishwasher
Sneak off and elope in Las Vegas

Extra, extra! Read all about it…

24 Aug

“Don’t do anything or find yourself in any situation that you wouldn’t want reported on the front page of the local newspaper.”

That was the often-repeated motherly advice given to one of my friends throughout her teen years.  As parents, we never want to see our child’s name in the newspaper for something negative, but instead, we hope that our children will be recognized publicly for good works and accomplishments. It’s a joy to see their name in print, and when it happens, we buy multiple copies of the newspaper, we email the online version to our friends, and we grab the scissors and glue so that we can add it to the scrapbook.

15 years ago, two of my very good friends experienced the death of their 4 week-old infant to SIDS. As I read her obituary in the newspaper, it saddened me that this would be the only time my friends would see their daughter’s name in the newspaper. No awards, no dean’s list, no game-winning home runs. Simply an obituary.

When we learned that Sammy would be born with HPE, we understood that he would have profound mental impairments, and we grieved the fact that he would never be a scholar, athlete or leader. Although I never vocalized it, in my heart I feared that the only public proof of his existence would be simply an obituary.

One of my favorite verses in the Bible is Psalm 37:4,“Delight in Me, and I will give you the desires of your heart.” On a spring morning in 2005 just after Sammy’s 2nd birthday, I received a desire of my heart as Sammy’s name and a color photo appeared on the front page of the Metro & State section of the Indianapolis Star. Although I hadn’t expressed my obituary fears to anyone, the Lord knew my heart’s secret desire, and He provided me with a moment of joy and pride to see my son in the newspaper.

When it became time to write Sammy’s obituary, he had already made the newspaper, been featured on our local tv news, had his story told on the radio, along with other miscellaneous newsletters, websites, and more. The obituary was no longer simply about Sammy’s death as I had once feared; instead, his obituary became a tribute to how he lived.

(The infant I mentioned above, Miss Mary Clare Hook, has had her name published in the newspaper several times since her passing as her parents have been active in fundraising and awareness campaigns to support SIDS research. She may have lived only 1 month and 2 days, but she still remains in my heart 15+ years later.)

Moving on is difficult…

21 Aug

With Drs. Hicks and Jansen

One of the things we did in Sammy’s life that was extra special to me was attending Sammy’s hospital’s NICU reunion. I loved being able to take Sammy and give the NICU doctors and staff the opportunity to see him healthy and happy. Because they had all seen him at his very worst, they could appreciate just how far he had come. For me, these were the people who educated me–like a favorite teacher–and they were a big part of our lives. They are the ones who saved our son’s life; many of them cried with us, laughed with us, worried with us and celebrated with us.

While watching a local news report tonight, I saw taped coverage from the NICU reunion which had been held today. It was in that moment when I realized that we didn’t get an invitation to the reunion this year–a first since Sammy passed. Although I doubt that I would have gone without Sammy, it caught me off guard to realize that whether I like it or not, the reunion has moved on…and it’s just another reminder that moving on is inevitable. But, it’s okay because I know that if I contacted my favorite doctors and nurses and invited them to lunch, they would go and that would be a special reunion too.

With Nurse Cathy Firestone