Day 2: We got by with a little help from our friends…

This is a continuation of a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock.

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So as soon as we got our prenatal diagnosis that our baby was going to have a terminal illness, my instinct was to seclude our little family in a pod so no one and nothing could get to us.  I planned to go it alone, I even wanted to.  I didn’t feel like anyone sincerely cared, and was pretty sure that people would find me whiny for wanting to talk about my sick son.  I really don’t think this was a symptom of depression…that did happen, but I am very comfortable being by myself and in times of crisis, I really like to meditate and work out a solution.

Today’s note is a tribute and a thank you to those of you who wouldn’t allow this to happen.  Many of you know who you are, but you may not know the impact you had on me by doing both huge things and things that may have seemed small at the time to you.  Others of you knew you were doing something huge and certainly didn’t want me to find out how truly selfless your act really was.  People say that in times of crisis you find out who your friends are, and to an extent I feel it’s true.  There are so many people who did so much to prepare me for Arthur’s birth, coach me through his life, and support me after his death, if I didn’t mention you name, it’s not because I don’t appreciate you, I just chose the three people who I think of every time I reflect on Arthur’s life.

The first person who came to my rescue was my dear friend Courtney.  We had been close as coworkers as well as spending time outside of work together.  Courtney took the time to do the research about holoprosencephaly when I wasn’t ready to do it myself but wanted answers.  She had always been a true friend throughout my pregnancy and I felt that I could trust her fully with this task.  She was also courteous enough to not clue me in on some of the truly horrifying ways that HPE has been known to express itself with some of the kiddos who have it.  She gave me just enough information to comfort me without unnecessary worry and she also seemed to know when it was time to change the subject and distract me when things just got to be too heavy. She was one of the first people to visit the hospital once Arthur was born and also came by my home during his stay with us.  This meant so much to me considering she drove over an hour out of her way both times just to let me know she cared.  Considering this is one of the busiest women I know, I really appreciate the time she took for us.

Another person who really pulled through for Arthur and me is a girl who I only knew peripherally until Arthur’s birth.  Arna is the daughter of a coworker who had recently given birth to a son herself.  As her baby boy would outgrow his clothes, she would send them with her mother to work to give to me, something I really appreciated.  Once I knew of Arthur’s diagnosis, Arna would send me messages of encouragement which really meant a lot.  I am comforted in watching her son Beckham grow, he is only 5 months ahead of where Arthur would be, and I really appreciate that she gives me the opportunity to see him, view his pictures, and hear his stories.

I feel like many of my old friendships became strained after Arthur’s passing.  I was no longer the same person I was before he came into my life and many people who I enjoyed being around didn’t seem to treat me the same.  In my journey to find comfort and also to learn more about HPE, I stumbled upon the Families for HoPE website which is a support group for families dealing with HPE a few weeks after Arthur’s passing.  I contacted an amazing woman, Leslie, whose son Sammy had HPE.  Leslie immediately returned my e-mail offering me a ton of support and also sent me a packet of goodies from Families for HoPE.  The thing I didn’t know is that while Leslie was comforting me, her own son Sammy was very sick and would be joining Arthur in heaven soon.  The selflessness it takes to reach out to a grieving mother when one’s own family is suffering is such a remarkable quality and I will always admire Leslie for this.

I have also formed valuable friendships on my road to recovery.  People who have encouraged me to start and continue endurance walking (which is the activity that I’m pretty sure saved my life by keeping me fit and distracted), other HPE moms, other moms suffering infant loss, and the people who have surrounded me all along who watch my evolution without judging.  To everyone who has been there, thank you.

Arthur absolutely taught me to not go it alone, friendships and people willing to offer words of encouragement are vital.

Courtney meeting Arthur for the first time. Oh, did I mention, Courtney doesn't hold people's babies.

The Thirteen Days of Arthur…

Over the course of the next 13 days, we will share the writings of Melissa Mouzin-Bennett.  Roy Hancock and Melissa Bennett are the parents of precious Arthur who was born with HPE.  In a memorial tribute to their beloved son, Melissa will share in her own words the things that Arthur taught his family about life.

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The Thirteen Days of Arthur
by Melissa Mouzin-Bennett

My son, David Arthur Lawrence Hancock (“Arthur”) was born on November 28, 2007 with a condition called Alobar Holoprosencephaly.  What that means, in a nutshell, is that very early in his fetal development, his brain failed to grow and divide into the lobes that we are supposed to have.  I was 34 weeks pregnant when he was diagnosed which means that for the first 33 weeks of my pregnancy I thought I was having a healthy baby.  We were told by a medical staff that it was rare for babies with the severity of his brain “malformation” (as they called it) to be carried to term, this severity of the disorder usually leads to miscarriage.  We were also told that he would likely be stillborn, but best case scenario would be his living out his short life in NICU, with modern medical technology, they could keep him alive from a few days to possibly a few months. The term they used to describe his condition was “incompatible with life”.

Probably the worst thing the medical team had to tell me, as far as I was concerned, was what he would look like.  I was told that he had “severe facial abnormalities”.  He had microcephaly (meaning his head was too small) and a bilateral cleft lip and palate (all of the bone and tissue between his nose and mouth was missing, yet another part that failed to grow and develop).  I was absolutely prepared to give birth to someone who would not only behave very different from most babies, but he would look very different as well, and as we decided to deliver at a hospital that was 3 hours from home so he could get the best care possible, I was also going to be induced 2 weeks early.  That gave me exactly 4 weeks to process this information and prepare.  I was absolutely terrified.  I wasn’t ready to make the decisions that were placed before me and I absolutely wasn’t ready to condemn my son to living out an all too short life in a plastic box.  In one respect, I wanted to hold on to him and never let him go.  Another side of me was so afraid of what he would look like and I questioned if I had the courage to even gaze into his face as I was expecting it to be horribly malformed.  Finally, Roy and I made the decision shortly before his birth to have him placed on palliative care, meaning no extreme invasive procedures were to be done.  This would ensure that we would be able to take him home and make memories with him.  We chose quality of life over quantity.  A decision that no parent should ever have to make.

The day Arthur was born was absolutely surreal.  My biggest fear that day was what would he look like.  Funny when faced with enormous legitimate fears, our minds always choose to dwell on something so insignificant, but they do.  I didn’t want to see him for several minutes after his birth, and the medical team was instructed to give him to his dad first.  I needed time before I could meet him.  The doctor handed him to his dad and informed me that he was really cute, she was sure he looked nothing like I was expecting.  I still wasn’t sure so I let Roy bond with the little squirmy blanket in his arms for a while longer.  I noticed how Roy was absolutely undisturbed by Arthur’s looks.  Then he told me that Arthur had my eyes, and I totally couldn’t resist taking a peek at my son.  He was absolutely beautiful!  Yes, he had a cleft palate, yes, his head was too small, but only at the top which made his cheeks look even chubbier than they were.  No, he didn’t look like most babies, he looked like my perfect little man.  And Arthur looked back at me with those blue eyes that were little clones of mine, and I knew I had the courage to do this.

I want to honor Arthur’s life this year by writing a daily note from now until December 11, the day he went to heaven (our family calls this Angel Day).  Since Arthur was born without the ability to learn, it’s obvious he was here for one reason.  To teach.  Each day I want to discuss a virtue Arthur taught us and also include a never before posted picture of him.  I feel that not only is this a wonderful way to honor a beautiful life, but also as it is so close to Christmas, to remind us all of how we should be treating ourselves and each other.

Today’s virtue is courage.  I don’t know if Arthur was courageous or not.  He was handed a really crappy set of genes, and was fortunate enough to be an infant without the intellect to truly understand what was happening to him.  He taught US courage though.  Roy and I learned how to speak up and make some very unpopular decisions that we felt would add quality to his life, even though we knew they likely reduced his days on earth. We also learned to face each day “as if” nothing was wrong.  We wanted Arthur to know he was loved and that’s all we cared about.  I feel that now that we have experienced life with Arthur, we can handle anything.

The first moment I laid eyes on my little man. Gazing into his little blue eyes gave me all the courage I needed for this journey.

Happy Thanksgiving to all of our HPE Families and friends…

One of our HPE families worked with a Massachusetts legislator to make today Holoprosencephaly Awareness Day.  As we count our blessings today, we celebrate our special children and the families who work day-in and day-out to bring HoPE to our families, our communities, and our world.

I’m thankful for…

the internet.  Without it, my journey of HoPE would have left me feeling so isolated and alone.

What are you thankful for?

Happy Thanksgiving Day
from your friends at Families for HoPE

Happy Halloween

Halloween can be a challenge for parents, and there are so many uncertainties that we face.

  • What costume?
  • Will it keep my child warm enough?
  • How do we incorporate the wheelchair into the costume?
  • How do we get to the front door if there are steps?
  • My child has a g-tube, so what do we do with all of this candy?
  • We won’t spend this Halloween in the hospital again, will we?

Even with the challenges, we push forward, we make plans, and we create great memories with our children. And sometimes, our kids end up with the best costumes in the neighborhood!

Do you have a Halloween memory you would like to share?  If so, please comment below and share your memory.  If you would like to share a photo of your child in a costume, please send the photo to info@FamiliesforHoPE.org.

Everyone have fun, stay safe, and don’t go to bed with a tummy ache!

2006 HPE Family Conference

Sweet Inspiration


It only takes one look at the smile on 3 year-old Maeve Tierney’s face to see that she’s full of sweetness, and apparently, that’s a family trait.  Maeve’s 8 year-old cousin, Cece recently used sweet treats to help raise funds and raise awareness of HPE.

At Craneville Elementary School in Dalton, Massachusetts, Cece’s third-grade teacher gave $5 to each of the students and challenged the students to make that $5 “grow”. Each child was allowed to choose his or her own method of growing the $5, and each was required to select an organization he or she felt strongly about supporting with the earnings.

Inspired by Maeve, Cece chose Families for HoPE as her charity, and she invested her $5 in supplies to make brownies and muffins. Once she had the product ready and her marketing plan in place, Cece set up shop outside of her grandfather’s business, with HoPE for a profitable bake sale. Priced at $1 per sweet treat, Cece grew her $5 into $43.00!

Such an awesome job, Cece!  Thank you for being so thoughtful and sweet!

A bake sale is a great way for kids to help raise funds and raise awareness for HPE.  Other ideas for kid-friendly activities include:

  • Open a lemonade stand
  • Encourage reading by organizing a Read-A-Thon
  • Have a coin drive
  • Ask you school to host a PJ Day or Silly Hat Day
  • Organize a Twister tournament or Dance-A-Thon
  • …Do you have an idea to add to the list? If so, comment below.

Some Kid

Throughout my journey in the HPE world, I have had the privilege to personally meet many individuals with HPE. So often, I find that I don’t even have the words to adequately describe the encounter because I’m so humbled by the experience. I can recite the definition of holoprosencephaly forward and backward in my sleep; I can quote statistics off the tip of my tongue; and, I can explain the symptoms and secondary conditions that are common with the diagnosis without missing a beat. Like many of you, I feel as if I may have earned a Ph.D. in HPE, if there were such a thing.

I can tell you all about what our children have, but when it comes to describing who our children are, I do not have concise words to adequately describe them all–I could talk for days on end about all of our amazing kids with HPE. With my own son, Sammy, there are moments when I catch myself saying, “He was some kid.” Not “some kid” as in a random, nameless person; but “some kid” in that he was spectacular, similar to the phrase, “Boy, that was some game we watched last night.

Charlotte's WebSome kid” makes me think of Charlotte’s Web, the classic children’s novel by E.B. White. From the very first line, we learn that the life of Wilbur is threatened. Wilbur, a newly-born piglet, is described as “very small and weak, and it will never amount to anything.” A barn spider named Charlotte is determined to save Wilbur, so she spins a web in the barn that reads “Some Pig” in an attempt to convince the farmer and the surrounding community that Wilbur is special and should be saved.

As parents of children with HPE, we know our children are something very special, but too often, we see the looks and hear the whispers of others in our communities (and sadly, even members of our own families at times) who view our kids like little Wilbur. In her attempt to save Wilbur, Charlotte also created other webs describing Wilbur as, “terrific“, “radiant“, and “humble“.

If you were to weave a web over your child to describe him/her in 1-2 words, what would your web say?

Terrific

Part Two: Living with a Prenatal Diagnosis of HPE

Yesterday, we brought you ‘Part One’ of Living with a Prenatal Diagnosis of HPE. This entry is the beginning of a series called, Perspectives. Donna, a mother living with a prenatal diagnosis of HPE, shared the first part of her story of what life has been like, since the diagnosis. She told about receiving the news and the grim picture painted of her daughter, by medical professionals. In ‘Part Two,’ Donna describes what it was like to share the news with family and friends, facing the unknown, and the conclusion of her story…for now.

Sharing the news
After doing a considerable amount of online research to better acquaint ourselves with HPE, and meeting with our Pediatric Neurologist, we decided it was time to share this news with our loved ones.  After telling our parents, we decided to send an email briefly describing what we’d learned, explaining there is a wide spectrum of possible outcomes and we really didn’t know what our Abby’s prognosis would be until we met her, but we’re just hoping we can be the parents she deserves.  It was important to Matt and I that we shared the news in this way, because there was no way we could handle repeating the story over and over, answering people’s questions, and dealing with their sadness for us.  Additionally, I was worried that Connor would pick up on the conversation, and this is certainly not something for him to wrap his precious little 4-year-old head around.  We are blessed with a wonderful support system of family and friends, and they understood our reasons for the rather impersonal method of communication.
 
Overall, the reaction we got from family and friends was very supportive.  Though, it’s my opinion that people definitely should think a bit more carefully before they speak.  I appreciate that people think I’m a strong person.  Thank you for the compliment, if that is all that was meant by it.  But, I’ve had people from the esthetician at my salon to close friends follow that compliment with telling me how they “couldn’t do it”, or “just don’t know if they could be that strong.” OK, just stop.  When people say that, I feel like 1. They are conveying pity, which I don’t want, and 2. They are saying that personally, they don’t think my daughter’s life is valuable enough to give her a chance, but good for me for going above and beyond.  I find it infuriating.  I’m not stronger than anyone else is; THIS IS MY CHILD! I want her, we made the effort to become pregnant with her, and I’ll do everything I can for her, whether she is the child I was expecting to have or not.  It’s called being a parent, giving unconditional love, advocating for your child. I had no idea I would have to start advocating for her so fervently before she was even born. I suppose it’s just preparation for what’s to come, once she’s born.

The day to day of dealing with the unknown
Since my ultrasound on June 17th, I have cried everyday.  Sometimes it’s just my eyes filling up for a minute in the car as I’m alone with my thoughts, or at the playground watching little girls run around.  Other times, it’s real sobbing as I try to go to sleep at night.  But nonetheless, it’s been 114 days straight that I’ve cried in some way.  My tears are not because I’m sad about having a child with special needs; though certainly, if I could choose, I would have my child be healthy and not be challenged in this way.  I am sad knowing that we won’t be able to do many of the things I’ve dreamt of doing with my daughter, and that we won’t enjoy the same type of relationship I have with my mother.  But, knowing that our life will be different or harder doesn’t make me feel bad for myself.  I cry, because I’m just scared.  I don’t know what to expect, and I’m scared of the unknown.  I’m scared that Abby may never make it home to see her nursery.  It was actually only a few weeks ago that I allowed myself to start buying things for her.  I’m scared that I’ll have to break Connor’s heart and explain why his sister died, or at the very least why she requires so much extra care and that I’m sorry, but I just can’t play with you right now, or I can’t go to your game.  He’s so innocent and so excited to be Abby’s big brother; he’s loved her as if she were his own from the minute he figured out I was pregnant! 

At the same time I worry she may die, I’m also scared that Abby will live for a long time, and I won’t be a good enough mother to both of my children, because she will require so much more attention.  I’m scared of what other kids might say to Connor about his sister being ‘different.’  Will I know how to handle those situations? I’m scared that I won’t be able to work, and I have to work to support our family.  I’m scared of how this will affect my relationship with Matt, and what his relationship with Abby will be like- it’s hard enough for men to bond with a new baby; it’s not like he had the last 8 months that I’ve had with her.  How will he deal with the stress and with the new responsibilities that will be required of him?  I am a planner for a living, and at this most critical moment in my life I HAVE NO PLAN.
Standing in my circle
My friend posted to Facebook the other day, “God long ago drew a circle in the sand exactly around the spot where you are standing right now. You were never not coming here. This was never not going to happen.”  So, I guess I’m exactly where I’m meant to be at this point in my life.  Though I feel ill-equipped for this difficult and uncertain journey ahead, Abby was always going to be our baby girl, Connor was always going to be her big brother, and if we can surrender ourselves to the unknown, perhaps we’ll find peace and the grace to deal with whatever we’re presented with.  I guess there is somewhat of a plan.  My new motto is “I really don’t know.  I’ll just figure it out when it happens,” because so many of the questions we have right now, just don’t have answers yet. That is an expression I would have scorned in my pre-Abby existence, however if I’m ever going to be at peace with myself, I have to just learn to go with the flow.  And I’m very HoPEful that I will be able to figure things out.  In just 5 weeks from today, we’ll start figuring everything out.

Thank you, Donna, for sharing your perspective with us, and thanks to our followers  for reading the first entry of our series, Perspectives. We HoPE you were able to gain further insight into living with a prenatal diagnosis of HPE. We are accepting more submissions, so please email us if you are interested in submitting your story! Again, we are seeking perspectives of the various phases of the HPE journey, including prenatally living with HPE, having an infant/toddler with HPE, having an elementary-aged child with HPE, having a teenager with HPE, having an adult with HPE, and having an angel with HPE.

Perspectives: Living with a Prenatal Diagnosis of HPE

This entry is the beginning of a series called, ‘Perspectives.’ We will be bringing our readers a variety of perspectives, shared by HPE parents in different phases of the HPE journey. These phases include prenatally living with HPE, having an infant/toddler with HPE, having an elementary-aged child with HPE, having a teenager with HPE, having an adult with HPE, and having an angel with HPE.

This particular entry was submitted by Donna, a mother living with a prenatal diagnosis of HPE. She is currently 34 weeks, and awaiting the birth of her daughter. Many of you reading this may be able to relate to this experience, if you are a HPE parent that received the diagnosis during pregnancy. I’m sure it will take you back to that very day when you learned about your child. As I was reading Donna’s story, it was almost as if I was recalling my very own story with my daughter, whose name is coincidentally Abby! My experience was very similar, except I was pregnant with twins.

If you are a HPE parent who didn’t receive the diagnosis during pregnancy or you are not a parent of a child with HPE, and just following/supporting HoPE, you will definitely find this entry interesting. This mother’s perspective will give you insight into what it’s like to find out you are expecting a baby with a life-threatening condition. The entry is somewhat lengthy, so we are separating it into two parts. The following is ‘Part One’ of Living with a Prenatal Diagnosis of HPE…

 

Waiting for Abby: The story of my pregnancy, as of 34 weeks…

 
Getting the news
In June of this year, I went to our routine 18 week ultrasound. Matt and I decided not to find out the sex of our baby this time around, and it seemed easier for me to just go alone.  I made sure the radiologist gave me plenty of pictures to share afterward.  When the radiologist suggested I head upstairs to my OB’s office to get the ultrasound results, I thought it was a little odd, but proceeded nonetheless, just as happy as when I arrived that day.
 
What followed has changed me completely.  It changed how I look at myself as a mother, how I look at my son, and my view of God in my life.  And, I’m very aware that my life is going to further change in ways I can’t imagine now.  Dr. Bowling, the doctor in my OB group who happened to be available, met me that day for the first time under what I imagine are some of the least desirable circumstances to meet a patient.   After introductions, she told me that there was a significant amount of fluid on the baby’s brain and it was there in place of brain tissue.  The head also appeared to be a bit enlarged, tracking a little over a week ahead of the rest of my baby’s growth.  This indicated some type of chromosomal abnormality, and further testing would be needed for clearer information.  Can you head over to the Prenatal Diagnostic Center for a Level II u/s right now?  If you can’t drive, we can arrange for someone to take you.
 
Up to this point, I was fine- I tend to be analytical and quite pragmatic by nature, so I wasn’t falling apart over the possibility of my child having a problem; no, at this point I thought, “Alright, u/s isn’t perfect and we need more tests to determine what’s going on.  Ok, let’s go get these tests done.”  No tears, no real worry.  Just doing what needs to be done next.  I don’t even think I called my husband yet at this point, as I saw no reason to make him worry at work, until I had something a bit more concrete to share.  So, two blocks away at the Prenatal Diagnostic Center, I had another u/s, met with a doctor, and a genetic counselor who all sat down with me and educated me on the basics of a condition I had never heard of, Holoprosencephaly.

A grim picture
Before they even really got into detail about the condition, they shared the grim statistics and worst case possibilities for what my baby’s life could be like.  Somewhere in all this I did find out that we’re having a girl, and that she would quite possibly never walk, talk, or do much on her own, IF that is, she would even make it through the pregnancy.  IF she is delivered alive, the prognosis would not be good, as the life expectancy for children with this condition is quite short.  Should we stop here?  For some parents this is just too much and we can certainly provide you with information about your options and terminating the pregnancy now, as it is still early enough.
 
Though I know it wasn’t their intention, it felt like they were assuming I would want an abortion and they were just going to guide me through the steps.  In the weeks that followed, I can’t even tell you the number of times I had a doctor or other specialist suggest that termination was “probably worth looking at.” I was even told that “this was a valid reason to terminate a pregnancy,” as if I was seeking permission or approval from the medical community.  I know that this is a very personal decision, and people have very strong feelings on both sides of the issue, but I was honestly saddened and insulted that it seemed to surprise people when I wasn’t the least bit interested in termination.  Maybe it’s because I’m already blessed to be the mother of my wonderful 4-year-old son; maybe it’s because I was already visibly pregnant and already felt my daughter fluttering around inside of me for a couple of weeks by then; maybe it’s because I’m Catholic.  I don’t know the exact reason, but there was no way I wasn’t going to give this child a chance; I’m a mother! My one concern was that this condition might lead to a very physically painful life, and that was the one thing I could not put my child through.  But our team of doctors agreed that aside from some pain related to surgeries she may need, that was not the case.  From then on, I actually started to feel angry every time someone asked if I was interested in “other options.” 
 
When my husband and mother arrived, the doctor and genetic counselor filled them in on what we had discovered, and then started us on HPE 101.  So many possibilities, so many questions, and no real answers at this point.  Once we left the center and I was in the car with Matt, I finally let myself fall apart.  I cried the hardest most gut wrenching tears, sobbing that came from the deepest part of my core.  I thought I wasn’t going to be able to breathe again.  I don’t tend to show much emotion in public, so after 3 hours of holding it all in, I had an awful lot of sadness and angst and fear to release.

Please, check back tomorrow for ‘Part Two’ of this mother’s experience of living with a prenatal diagnosis of HPE. This will include her experience of sharing the news with family and friends, facing the unknown, and the conclusion of her story…for now.

People First!

While you are reading HoPE, you may notice I say things like, “The child with HPE” or “The adult with HPE.” This may sound kind of wordy and repetitive, but there is a reason for it! You won’t hear me say, “The HPE girl” or “The HPE teenager.” Here’s why…

Have you ever heard someone say, “He’s an Autistic kid” or “You know, the Down Syndrome girl.” Or in the HPE community, you may hear, “The little HPE boy.” You may not realize it, but this is offensive to some people with special needs and their families. Some of you may be thinking, wait a minute- I have a child with HPE/special needs, and I don’t find this offensive. I didn’t even know there was anything wrong with it! Please, let me explain…

In the world of special needs, there is a phrase called, ‘People-first language.’ I was first introduced to this term, while pursuing my Bachelor’s Degree in Special Education. People-first language is exactly what the phrase says… putting people first! In this case, it’s putting the person with special needs first, with their disability second. When you say, “The Autistic kid” or “The HPE girl” it’s almost like you are dehumanizing that person, or defining them by their disability. This made sense to me as a teacher of children with special needs, and it makes perfect sense to me now, as a mother of a child with special needs!

From a personal perspective, when I introduce my daughter to someone new, I want them to see Abby. Not HPE Abby! Abby is a beautiful girl, just like all of the other children with or without HPE/special needs. This is how I want the world to see her! I don’t want the world to look at her and see her HPE. Yes, HPE is a part of Abby and that’s why we are all here, but she is a person, before her HPE!

So, there you have it… the explanation as to why I may come across as wordy when speaking of our kiddo’s with HPE, but there’s a good reason behind it! Please, keep this in consideration as you speak of people with disabilities. 🙂

In the works…

Thanks for stopping by HoPE!  Don’t forget to scroll down the page, to read HoPE’s first entries! Here’s a sneak peek at what you can expect to see on HoPE, in the near future…

~Child of HoPE: We will be regularly featuring a child/adult with HPE! The purpose of this entry is to give more insight into the life of a child/adult living with HPE. Of course, you can go to HoPE’s Blogroll anytime, and learn more about any of the kiddo’s with HPE, by clicking on the link to their webpage/blog!

~ Getting into the groove: HoPE will be featuring a new series about music! Music often helps us get through different phases in our lives. We want to know what kind of music HPE families listen to, as they experience different moods. We want to help create a playlist for different moods/themes! We are seeking songs for encouragement; songs about motherhood; songs to make you feel happy; songs when you feel reflective; songs to help you cry; songs about determination.

~ HoPE around the World: There are a number of HPE families living in the United States, but there are also several HPE families living around the world. We plan on featuring these children and their countries!

~Perspectives: HPE families experience different phases. These phases include prenatally living with HPE, having an infant/toddler with HPE, having an elementary-aged child with HPE, having a teenager with HPE, having an adult with HPE, and having an angel with HPE. We think it would be interesting to hear different perspectives from all of these phases, and share them with our readers. We are accepting admissions now!

~Guest Authors: There are several blogs and webpages written and maintained by HPE families. (You can view these under the HoPE Blogroll.) With so many writers and bloggers in the HPE community, we want to invite those individuals to submit entries to HoPE, as this blog is for everyone! If you are interested in submitting an entry to HoPE, let us know!

~HPE Gear: It’s that time of the year again…Fall! In the HPE community, that means it’s fundraising time for FFH (Families for HoPE!) This year’s fundraising efforts are in the works, and we will soon be bringing you info on how to purchase your HPE gear!!

I need to warn you that it’s contagious…

As a parent of a child with complex medical needs and the potential for recurring hospitalizations, the very last phrase we want to hear is, “it’s contagious”; however, when it comes to laughter, being contagious is welcomed and encouraged.  Laughter is good medicine for a stressed-out, sleep deprived parent.

When we laugh, we trigger the release of endorphins and serotonin—the feel good hormones that create the feelings of euphoria, love and happiness.  As well as triggering endorphins, laughter also suppresses stress-related hormones in the brain, relaxes muscles, enhances respiration and circulation, and even oxygenates our blood, which allows us to think more clearly.

Throughout my son Sammy’s life, we laughed a lot.  We said silly things, made silly faces, and sang silly songs.  Sammy experienced seizures, and it seems ironic to me that even some of Sammy’s seizures presented as smiles and chuckles.  His signature photo that puts a smile on everyone’s face…that big smile was a seizure.

Six weeks after Sammy passed away, I was invited to a girls’ weekend.  The girls were three other women who had also experienced the death of a child—two were HPE moms and one was the mother of a young man who passed after a life-long battle with cystic fibrosis.  One of the ladies rented a log cabin for the weekend, and we made plans to meet there on a Friday evening.

We all brought scrapbooks and photos of our kids, and for the first few hours, we looked at pictures and shared stories about our kids’ lives and our experiences.  There were a few tears at first, but after a while, there was laughter…lots and lots of laughter.  The kind of laughter that is contagious; the kind that makes your abdominal muscles get a good workout; the kind that makes you run to the bathroom for fear that you might wet your pants.

The few days I spent secluded in a log cabin with those grieving moms confirmed to me that there was still HoPE even in the midst of my mourning.  I had been infected with contagious laughter, and it was good medicine to my soul.

Do you need some infectious and contagious laughter today?

Sweet Sixteen!

Oh, how sweet it is! We had two teenagers with HPE turn 16 this week! This is quite an accomplishment for two girls who were given very little HoPE at birth. Way to go, Dakota and Leanna!! You are an inspiration! Happy Sweet 16th!!

Why HoPE?

You may be wondering to yourself, why does the HPE community use the term, HoPE?? If you look at the ‘What is HPE’  page, you will see the statistics and prognosis for HPE are somewhat grim. The HPE community has adopted the ‘HoPE’ term, as a reminder to never lose hope. Sadly, hope for HPE is nearly nonexistent in the medical community, but in reality, infants and children with HPE are surpassing the statistics–there are individuals diagnosed with HPE who are now living into their teens and twenties! A diagnosis of HPE is heartbreaking, and the statistics on HPE are devastating; however, the courage and determination of infants and children with HPE and their families are truly inspirational.

The actual term, HoPE, was developed several years ago. While addressing the audience at the 1st NIH Conference on Holoprosencephaly in 2000, Dr. Francis Collins, Director of the National Human Genome Research Institute, noted that HPE is one letter short of spelling “hope”.  He challenged his audience to be the “O” team and find the missing letter needed to change HPE into HoPE.  Thus, HoPE was born!!

As you will see on this blog, the term, HoPE, is still going strong! We are looking forward to sharing the HoPE in Holoprosencephaly with all of our readers!

What is HPE?

HPE is briefly discussed in our ‘About’ section, but if you are new to this term, you may find yourself wanting to know more! Well, look no further, because we have an explanation for you!

Ho•lo•pros•en•ceph•a•ly \ho-lo-PROS-en-sef-a-le\ is a congenital brain disorder caused by a failure of an embryo’s forebrain to divide to form bilateral cerebral hemispheres (the left and right halves of the brain), causing defects in the development of the face and in brain structure and function.  According to the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations, “It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life.”

HPE is a condition without a cure or a standard course of treatment.  Treatment for HPE is symptomatic and supportive.  Individuals with HPE can also have secondary conditions such as mental retardation, epilepsy, diabetes insipidus, pituitary and hormone disorders, movement disorders, gastroesophageal reflux, respiratory disorders, and hydrocephalus.