| |
|
" I am no longer afraid of my own death.....for it will become the day when I will meet my precious Bennett once again.....for all eternity."
~Melissa Roy
 My
name is Melissa Roy,
I am the proud mom of a Trisomy 13 Angel named Bennett-Chadlen, March 29,
2007-Good Friday, April 6, 2007. The following is a link to my blogs and my
sites. I have chronicled my "Life with Trisomy 13".....from the first
positive pregnancy test to the present. It is a story of Hopes, and
Dreams... Love... Grief... And Healing.
If you have Facebook,
feel free to join my group in Memory of Bennett-Chadlen
and help spread awareness for all chromosomal abnormalities and birth
defects. Please join and share this link to show your support for all of us
that are living through this journey.
Click here for MySpace
Click here for photos
I also own and moderate these PRIVATE message boards:
~*Expecting-Blessings*~
For Prenatal families awaiting the arrival of their ~**Special Blessing**~.
If you have received a poor prenatal diagnosis and are needing a safe place
to share you feelings, it is my hope that you will be able to find comfort
and support amongst others that are walking this path with you. You may also
receive comfort from others that have walked this path themselves.
~*Awaiting-Angel-Blessings*~
A support group for those pregnant following an infant loss.
Blessings for those expecting again following Infant Loss.....a gift from
their
Angel above.
~*Wishing-on-a-Star*~
For those that are Trying-to-Conceive following Infant Loss.
The decision to try again is monumental in helping you to heal.
May you all be blessed with your heart's desire.
~*Broken-Hearted-Lullabies*~
This group is specifically for those that have terminated a much loved and
wanted baby for medical reasons.....and are living with the heartache and
regrets of this loss.
This is a place to come and feel safe.....and supported.....and most of all
comforted.
Everyone deserves love and acceptance....and I want you to know that you
will find it here.
 |
5-4-07
During Bennett-Chadlen's service on the night of his burial.....a woman came
to the house. She approached Chadlen and I and told me that she was there to
deliver a message from my Bennett. She shared this message with everyone.
Here is what she said: "I kept seeing this little baby boy all last evening.
He kept appearing before me....all dressed in blue.
(She had no way of knowing that he was indeed all dressed in blue. I buried
him in the blue gown that I bought for him at carter's in the states. The
one that said Thank Heaven for Little Boys on it. It seemed fitting. Over
top of his outfit he was wearing the beautiful white sweater that my Grandma
knit for him, and he was wrapped in his blankets...the blue satin lined one
from carter's and the one I crocheted for him. His blue outfit was not
visible.)
"All evening this little boy was following me around.....appearing before
me. I kept seeing him all night as I tried to sleep.....and then again in
the morning when I got up. I finally spoke to him, and asked him what it was
that he was trying to tell me......it was obvious that he was there for a
reason. He led me to a book shelf.....and to a book that I haven't opened in
several years. I reached for the book, wondering what it might be that he
wanted me to see. He told me to open the book, because there was a message
in there for his mom......from him. That's when I saw this envelope stuck
between the pages of this book. I had put it in there many, many years ago
and had forgotten about it. On this envelope is a prayer that I had copied.
This little boy told me that he wants me to read this to his mommy......and
asks that she not be sad."
Native American Prayer----author unknown
I give you this one thought to keep.
I am a thousand winds that blow,
I am the diamond glints in the snow.
I am the sunlight on the ripened grain,
I am the gentle autumn rain.
When you awaken in the mornings hush,
I am the swift uplifting rush,
Of the quiet birds in circled flight.
I am the soft stars that shine at night.
Do not think of me as gone,
I am with you still in each new dawn.
I feel that it is my duty today, to share this with all of you....
It is the message of the day.....from your children, to you.
Be thankful for this glorious day....that the Lord has given us.
God bless,
Melissa
- - - -
Update: April 13, 2007
Bennett Chadlen Roy passed away on Good Friday....April 6th, 2007.
He passed peacefully in the arms of his Mommy and Daddy. I rocked him in my
arms, while his daddy played his guitar for him. We sang to him
softly......"Bennett we love you.....Oh Bennett we love you....", over and
over again.
He blessed us with 8 glorious days, a time we will never forget.
Bennett made a huge impact in the lives of his parents, his siblings, his
Grandparents, Auntie's and Uncles.....as well as in the lives of all those
who met him. He was a strong presence......and continues to be even now.
Bennett Chadlen Roy returned home with his family on Easter
Sunday.......What more fitting time than that, for such a special little
boy.
 An offering of tobacco was laid out earlier in the morning by a medicine
man. Prayers were put out to the Spirits for a name to give to
Bennett.....his native name.
Their prayers were answered, and Bennett was given the name "NIMKEE"....which
means "LITTLE THUNDER".
From now on, when I hear the thunder......I am to know that it is my NIMKEE
letting me know he is near. Coincidently....I have always loved
storms.....especially the rumbling of thunder in the distance. I now look
forward to many.
My brother made Bennett's casket, as well as a large wooden cross for
Bennett...inscribed with his name....
"NIMKEE BENNETT CHADLEN ROY".......
to break it down even further....
Nimkee.....'Little Thunder'
Bennett....'Little Blessed One'
Chadlen...(his dad's name)....'Warrior'
Roy....(my maiden name)....'King'
What a powerful name for the gentlest of souls....but a true fighter all
the way.....
The wake is to take place in this home over the next several days. The
service will also be held here, followed by a burial just prior to sunset,
in a quiet little cemetary 6 miles outside of town....in a little village
where my great-grandparents reside. It is off the main highway.....in a
peaceful hideaway. There are many lovely shade trees, and much privacy all
around. He will truly rest in peace in a beautiful and tranquil
setting.....as we all would wish for ourselves. There is a plot beside him
reserved for me....and my great-parents will be on the other side of him
when they too shall one day pass. He will not be alone.
I am no longer afraid of my own death.....for it will become the day when I
will meet my precious Bennett once again.....for all eternity.
"Here is a photo that was taken during Bennett-Chadlen's wake.....it
captures what we believe to be Bennett's spirit surrounding his daddy with
love.....(unexplainable light source around Chadlen's head....it also
appears in various positions in other photos taken since his passing...he is
clearly with us during our times of sorrow and need for comfort)."
- - - - -
 UPDATE on Bennett
Born 3-29-07
Bennett (blessed little one) arrived at 8 am this morning. He is doing
great. He is alert and looking around. He responds to light and sound.
The head of general surgery from HSC came over to see him and said that
maybe he doesn't even have a diaphragmatic hernia. He has a cleft palate but
nothing else that we know. Melissa's dad and I are going to the NICU now to sit with him. The news
couldn't really be better at this point but we are not our of the woods yet.
I think with Dr. Langer involved, he will rec. good ethical care here. All
mom wants is for him to have a chance.
I'll report more when there's more known.
Much to be grateful for! Thank God Update February 13, 2007:
On January 12, 2007 I traveled to Toronto to have a fetal MRI performed on
Bennett. It was confirmed that Bennett does indeed have the Left CONGENITAL
DIAPHRAGMATIC HERNIA that they suspected on his last ultrasound. The good
news is that it is not severe. The top tip of his stomach is protruding
through the hole in his diaphragm and is not putting any real pressure on
his lungs or heart yet. I really hope it stays this way and does not get any
worse. His lung development is very good at this point.
The MRI also confirmed the suspected DANDY WALKER MALFORMATION. It is
presenting as a small cyst, without hydrocephalus. I was told this would
likely not need treatment at birth, and they cannot know prenatally what
effect this will have on him, if any.
On January 17th, I traveled to Toronto once again. I met Barb Farlow, mom to
angel Annie, at the Children's Hospital
where I had to have a repeat fetal echocardiogram performed. The
cardiologist was once again unable to get a good view of Bennett's aortic
arch. He cannot confirm or deny a problem if he does not get a clear view.
He reported that Bennett has a normal 4 chamber view, his heart is on his
left side as it should be, blood flow in and out is good, heart rate steady.
No visible holes anywhere. He is requesting further testing done at birth
after stabilization of Bennett. He did tell us that if there is a problem,
called Cortication of the Aortic Arch, that it can often resolve itself with
meds, sometimes surgery is needed. He said it is one of the more common
problems seen and that the surgery if needed is considered mild. He also
said that he would have no problem ordering this surgery for Bennett if he
needs it, despite his t-13 diagnosis. Great news!
Barb and I then headed to the special pregnancy department at the hospital
across the road. Immediately upon arrival we were whisked away into a room
to have a meeting with a neonatologist. We answered some questions she had,
then I told her what my wishes are for Bennett. I told her that I want
aggressive treatment at birth, just as any other non-trisomy baby would
receive. I made it perfectly clear to her that I am aware of his current
status concerning the diaphragmatic hernia, and what the outcome may be, but
that I expect him to receive the same care as any other baby. She explained
to me what her role would be in the delivery room, and why they had to
intubate, ventilate, etc..... She referred to Bennett by his name throughout
this consultation. I was very pleased with this.
I then had a repeat u/s. Bennett was showing to be a bit growth delayed by
about 2.5 weeks......so the nurse said.....but she also told me he was about
3 lbs. She said his head measurement was still a bit small....in the fifth
percentile. The hernia had not progressed. She did not mention anything else
to be wrong. At least this time I was able to view the entire exam on my own
monitor.....but everything happened so fast there was not much time to ask
questions. I met with the perinatologist following this exam and he said he
was making me an appointment to see Dr. Langer. He is a surgeon, that I
found out later is Chief of Surgery at the local Children's Hospital.
Update February 6th:
Barb and I returned to the children's hospital to meet the surgeon. We were
joined at this meeting by several people. The Director of Patient Reps, Sr.
Staff Dr. Of Bioethics, a Social Worker, the Chief of Critical Care, as well
as the surgeon himself Dr. Langer the chief of surgery. He let me know right
away that he would perform Bennett's surgery following birth when he proved
himself to be stable enough. I was so relieved that I cried. We spoke a bit
more about the procedure, and my feelings about Bennett and what he means to
me. I took the opportunity to explain a bit about the survivors of t-13 from
this site hoping to show them how wrong they are about the information they
have regarding this syndrome. I showed them some pics of living children and
gave a brief outline of how these children are able to learn and do things
that most doctors think is impossible. It was a successful meeting.
We went across to the clinic again for another prenatal appointment. The u/s
was performed by a very nice young nurse. She was very patient and showed us
everything she was doing.....and explained things as she went along. We got
to have a very good look at Bennett....again on our very own monitor. He is
growing very well. His head measurement is now normal. He is showing to be 5
lbs already!!. No growth delay there! His hernia is not progressing. His
hands were not clenched.........he was sucking his hand and holding his foot
with the other hand. We finally did get a look at his face. He looks great!
I just received a call last night letting me know that I am expected to be
in Toronto on Feb.28 to await Bennett's arrival. I will be 36 weeks at that
date.
As I reflect back on the past few months, I am amazed at how differently
this is all playing out. I still do not have any idea what the outcome will
be for Bennett, but I am so grateful to have had this time with him. I have
learned that I am much stronger than I ever thought I could be, and that I
am surrounded by some very wonderful and supportive people in my family and
community. Thanks be to God for the many blessings in my life.
Look out Barb........here we come!
 Update: December 25, 2006
December 6, 2006 I traveled to Toronto to have a fetal echocardiogram and
phase II ultrasounds performed on my precious Bennett. I told my geneticist
that I needed to have a better look, even though they felt secure with the
last results that told me so many things were wrong that there basically was
no hope left for him.
Thank God I did.
First, I was joined by another mom from this site....Barb Farlow....mom to
angel Annie.......and a godsend to me. Having her with me that day was so
comforting and I will never forget how much stronger I felt just for having
her with me. Thank you so much Barb :O)
My first appointment was booked for 8 am. I went up to the fetal echo area
and Barb was already there waiting for me.....she was there before I was! I
registered and was led to a waiting area...but not for long. I entered the
room and spent the next 2 hrs being examined by a very nice, but quiet
woman. After quite a while she moved us to another room to have a better
look with a better machine.....so that was good that she was being very
thorough. After more time passed we were joined by the cardiologist....a
very nice man. He took a very detailed look at my Bennett's heart and made
me feel more comfortable right away by engaging in conversation with me
throughout his examination. Bennett was being a bit shy that day.....I had
to turn on my side for the cardiologist to get a better look....but it was
not good enough. The cardiologist denied the initial results of HYPOPLASTIC
LEFT HEART......he said he DOES NOT HAVE THAT......he said he SAW 4
CHAMBERS....with the right ventricle being a slight bit larger than the
left.....but that is a far cry from the initial results which told me they
only saw a solitary enlarged chamber. He did not get a good look at
Bennett's aorta so he wants me to come back and have the test repeated on
January 17, 2007. He chalked that up to probably just 'technical
difficulties'........Bennett's heart rate stayed steady throughout the
entire test.....about 156 bpm. The results also showed that there is NO
VISIBLE VSD.....but he did tell us that there is still a chance he can be
born with this....as these things are often difficult to see prenatally.....but
I left there feeling a whole lot better than when I went in! WOW!
My next appointment was for the phase II ultrasound which was being
performed at a different hospital across the street. This test also took a
very long to be completed....no complaints though.....I wanted them to be as
thorough as possible. The first u/s showed that he had closely spaced
orbits which indicated HOLOPROSENCEPHALY.....this phase II test did not show
this to be true. I was told he would be born likely unable to regulate his
breathing....which on top of his seriously malformed heart would make it
impossible for him to survive any length of time after birth.....if he was
born alive at all.....due to the diagnosis of MILD HYDROPS....which quite
often causes premature fetal demise....resulting in a stillbirth. Well the
results of this phase II scan denied the existence of hydrops.....
By this point I was really starting to wonder, "what is going on here?"
They had a checklist of things they were looking for....and one by one they
checked them off throughout the duration of this test. This is what I came
out with. Due to the fact that Bennett was not lying in a very good
position they were unable to get a look at his LEFT DIAPHRAGM.......they do
not know for sure if he has one or not.....
If he does not have one...this would indicate that he will be born with a
LEFT DIAPHRAGMATIC HERNIA.....which is very serious congenital birth defect.
The lack of that part of the diaphragm would allow the stomach, liver, or
intestines to move up into the lung and heart area and possibly greatly
affect the ability of the lungs to develop and grow properly. This in turn
would make it very difficult for him to breathe unassisted when he is born.
Babies born with this condition require surgery to survive.....I was told
that because he is an amnio confirmed trisomy 13 baby I will likely find it
impossible to find a surgeon willing to do the surgery should he be born
needing it.
Well, my heart sunk even deeper hearing this. I asked him why.....he then
reminded me that my baby boy will likely be born severely developmentally
handicapped. I told him that I am aware that there will very likely be some
sort of handicap but he cannot convince me it will be that severe. I told
him of the children I have seen through this very site that go on to live
much better lives than any doctor could have ever predicted and that these
children I have seen and heard about from the parents themselves seem to be
happy and very affectionate children......capable of understanding things
that they may have difficulty expressing verbally. I told him that some of
these children are very mobile......some can walk unassisted...which leads
me to believe that there is hope for my beloved Bennett. The medical staff
in the room looked at me like I was delusional.
I asked him what else is wrong with him. He told me that they suspect he
has Dandy Walker Malformation......and explained a bit about it. When we
asked about the effects they said there could be some mental
retardation......to what extent nobody knows until later on after he is born
and begins to develop or not. We asked if it is fatal....and we were told
no. These were the only things they think they may have seen....but cannot
confirm for me at this time.
I asked him what the next step is.....he said he could see about birthing
options for me....which would revolve around palliative care for Bennett at
birth...in whichever hospital closest to home was comfortable with providing
this. He also told me he would not suffer as they could medicate him to
prevent that.....well that just made me feel even worse. He again reminded
me how there was no guarantee that even a 'normal baby' would come through
the hernia surgery should they need it....and I told him that I would rather
lose my son during surgery knowing that someone had tried to save
him.....than to lose him because no one thought he was worthy of trying to
save.....that I don't care if he is going to be developmentally
handicapped...and that he is my son, and I love him very much and that I
will do whatever it takes to care for him should he be allowed to
live.....all the while crying while I said all this. He told me that he had
concerns about the distance I have to travel for these trips for medical
appointments....but said he would talk with a pediatrician about my case and
phone me to discuss whatever this pediatrician helps him to decide about my
Bennett's fate. I told him that I have an appointment set up for the repeat
fetal echo in January ...and asked him if I should cancel it then. He then
decided to have me come back to have the phase II scan repeated that same
day and hope that they would get a much better viewing then when he would be
several weeks older and bigger. They told me he does not have any growth
retardation yet....which is good as many of these babies are behind several
weeks by this time. There was mention during the test that his head appears
smaller than normal.....but this was not noted in the final report.....so I
am not sure what to think of that.
Anyway......last week I received a call from the same hospital's booking
department. The doctor I saw last has decided to have me come back January
12 and has ordered me to have a fetal MRI performed. So this is quite a
turn around. I am very appreciative that he believes my son is worth having
another better look at....but I am also very concerned about the possible
results of this test. I know I need to be as prepared as I can be......but
for those of you who have lived with, or are living with, the prenatal
diagnosis stage.....this sort of news is bittersweet. This could mean great
things.....if he is all intact. OR.......it could mean hearing more bad
news that I so badly do not want to inflict on myself again.
In the meantime......I am going to just pray as I always do for all us here
on this journey together, regardless of which stage you are in. I am so
grateful to our God that Bennett is still with me......and seems to be
growing right on track. And boy, is he active......and strong!
To any of you out there that have just received this diagnosis for your
precious cargo....please do not give up hope. My Bennett is proving to be a
miracle in the making. I do not know what my future with him is....but I
can tell you most certainly I am enjoying to the fullest each day and each
kick we have together. There are no regrets......only the deepest love
imaginable for my darling boy...my Bennett :O)
- - -
It's official.....I have finally chosen a
name for tiny, precious unborn son.....
"KING BENNETT....MY BLESSED LITTLE WARRIOR.....
Which translates to ~Bennett Chadlen Roy~
Bennett meaning....."Blessed Little One"......
Chadlen meaning...."Warrior".....which is also his dad's name.....
Roy meaning...."King".....my last name and a noble name for a noble little
boy....
I have thought long and hard about this name....for I wanted a name that
would have so much meaning for this little guy of mine.....I wasn't sure
about naming him after his dad...but then I thought....Why Not?....his name
means "Warrior"....and my son is a tiny warrior...fighting his way through
this journey we have been given....
He has not given up yet....when so many of these trisomy 13 babies don't
even make it this far.....
And Bennett.....well that is not an everyday name....it is unique.....just
like him.....and he is truly my "Blessed Little One"...what better name than
that......
There you have it....my precious son goes nameless no more...... BENNETT & I
are taking each day as they come....there have been many ups and
downs.....good times and sad times....but we are in this together he & I....
I will not give up hope of bringing him home one day....I believe in
Miracles.....for he is already a tiny miracle.....to me.....I wasn't
prepared to ever have another child....I honestly didn't think it was
possible at this time....I was preparing for surgery....(partial
hysterectomy)...that would have prevented this from happening ever
again....So he is my little miracle baby.....my *Blessed Little One*...
MY BENNETT.......
I LOVE HIM SO MUCH... 11-11-06
I received the amnio and ultrasound results a few days ago. The amnio
showed that the baby has Full Trisomy 13. The u/s results found a few
things, a couple of them serious. The heart is showing as seriously
malformed with and enlarged solitary chamber. The abdomen seems to be
retaining fluid and was described as "mild hydrops". Either one of these
things is serious on their own. The combination of these two findings is
giving me reason to fear that these days I have left with this tiny new son
of mine are to be treasured for the pure gift that he is to me....to us.
When I found out I was expecting again....so unexpectedly....I was shocked
and afraid of how I could fit another baby into my already hectic life. Now
I cannot imagine not having this little guy in my life.
Nobody knows why these things happen and we will probably never know.
The gift of this precious new son has taught me a lot about myself. I am
learning and loving in ways that I have never thought possible.
I can feel his tiny feet dancing inside of me as I sit here and write
this....almost as if to say, "Hey Mom ......I'm still here."
We are awaiting a date to meet with the geneticist as she wants to meet with
us to discuss some things and answer any questions that we may have. There
is a part of us that wants to know as much as we can so that we can prepare
for whatever is to come our way. Then there is the other part that causes
us to just want to hide away as knowing more is just adding to our anxiety
and pain.
I am not giving up hope yet....I still believe in the power of prayer.
However this turns out for us I know that God will be here to help us
through this delicate time in our lives.
I also thank God each day for giving me my other beautiful boys. Seeing
their innocent little faces and receiving their unconditional love during
this difficult time makes it so hard to be sad in their presence. I have
pics below that show these gorgeous little men in my life....as well as a
pic of the surprise that awaited us yesterday morning.
Life is still a beautiful journey.
Melissa & family
mroy@vianet.ca
   - - -
Update 11-7-06
 I had my ultrasound this morning and received some pictures that I can
finally post of my "perfect little one". The technician hinted that she
thinks it looks rather "masculine", but the final amniocentesis results
should be able to confirm or deny this. As we do not know for sure what the
results will show we still do not have a name to report at this time. It was
a great relief to me to finally see this baby again. The technician was
very nice. She is a woman that I used to go to school with, part of grade
school and high school. She is aware of the diagnosis and was therefore
taking a closer look to see what problems there may be. That was hard
knowing that, I'm sure for both of us. But she did tell me that at any time
I feel the need to take another look just to let her know and she can book
me in. So that is a relief too. I suppose one could assume that it is just
one of the perks of living in a small community. I will let you know when
there is more news. Until then, thank you all for your support. It really
does help.
I have a website that you can check out if you like...
http://www.myspace.com/crazy_for_daisies I have a song on
there, it is really beautiful, the singer is not me. I listened to her
music....and loved the song.
I posted it to my page....then received the diagnosis days later. I think
it is really fitting for my situation. I have written my feelings and stuff
in my latest blogs....feel free to read them also.....i just want to spread
the word about this to all...and create some sensitivity about choosing to
keep my baby....everyone has been so kind....they have checked out the LWT13
site too....positive feedback from everyone....thanks to all for sharing
your stories....you have inspired me to keep the faith....and PRAY...AND
PRAY...AND PRAY....xoxoxo
Sincerely, Melissa & family
mroy@vianet.ca
11-3-06
My name is Melissa and I am currently 19 weeks, 2 days pregnant. My baby is
due on March 28, 2007. I do not yet know the sex of my baby so therefore I
do not have a name to report at this time. I opted to have an amniocentesis
done after the initial blood screening test told me that my baby had an
increased risk of having trisomy 18.
The diagnosis of trisomy 13 was made by
using a test called FISH. I received the diagnosis just 8 short days ago.
The final results are to be in any day now so I will know more then. I live
in a small town on Manitoulin Island, Ontario, Canada. I am going for a
sonogram test on Monday, November 6, 2006. I will get a chance to see my
baby once again.
I am excited, but also a bit fearful of
what I may find out next. Thanks to this site I am keeping my faith in the
Lord and hoping and praying each day for another day with my little one, and
also thanking the Lord for giving me the opportunity to have this special
babe for just one more day. It is still a joyful journey, come what may.
Melissa Roy mroy@vianet.ca
Click
here for webpage |
|
Translation
SOFT
