Showing posts with label Birth defects. Show all posts
Lane Family
Family Story Assets (Word Document, Photos)
Click here to download
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In June of
2008, the day after celebrating our 2nd anniversary, we welcomed our
first little girl, Emma Cathryn. She was perfect in every way, and we were beyond
thrilled to be parents! As we watched
her smile for the first time, laugh for the first time, learn to crawl, walk
and talk, we quickly realized we wanted more of the same joy she brought into
our lives. Four years later Ellie Cate
was born. It was a perfect pregnancy, she looked perfect, there were no
complications, and no warnings for the heartbreaking journey our family was
about to face.
We were
getting ready to take Ellie home from the hospital at 2 days old, and our Pediatrician,
Dr. Guetersloh, came to check on us. She said that Ellie looked great, but that
she “heard something” that she wanted to have checked. Seven days later we met
with a cardiologist for a follow up, and after 3 hours of testing we heard the
devastating words that no parent every wants to hear… “your daughter has a
heart defect, and there is no way around it, she will have to have open heart
surgery”…followed by a ton of tears, confusion, and sheer terror.
With no
outside symptoms, or warnings signs, Ellie was diagnosed with Transitional AV
Canal, which means the part of the heart that separates the two upper chambers
did not form, and the two chambers were acting as one. This also meant that as
she grows older the blood would not supply sufficient oxygen to her organs.
Open Heart Surgery was the only way to fix our sweet little Ellie. They wanted
her to be a little older, so that her heart was bigger, and wanted to get past
flu and RSV season before having surgery. So for 12 months, we waited, we researched,
we prayed and we cried a lot. There wasn’t a night that went by that I didn’t
hold Ellie all night long, or have my hand on her chest or back at all times,
making sure her little heart was still beating.
At 14 months
old, we handed Ellie over to Dr. Forbess’ team, and watched her gently wave
goodbye to us as they carried her down the hallway. She was in surgery for a
total of 4 hours, 35 minutes of that her heart was stopped and she was placed
on the heart and lung bypass machine. We received hourly updates, but nothing
was better than that final call that said she “was a little rockstar”! What a
little miracle she was! We went home, and you would never have known she had
just been through open heart surgery…life was back to normal…except for the
part where we had to stay away from everyone for fear of her getting sick. No family
vacations, no large family gatherings for holidays, but it was all worth it for
her health. I felt like I could breathe for the first time in over a year.
At her sixth
month post op she received a fantastic report. Her heart looked great, we could
get out again, and go places without too much fear. We were all overjoyed! At
that checkup, we told the team that we had always wanted a large family, but
worried about the possibility of having to go through this again. They assured
us that Ellie’s heart defect was not genetic or hereditary, but rather it was
something that “just happens” sometimes, “like a lightning strike”. They also
stated that it was very rare, less than a 2% chance that it would happen
again….we promised each other that day, to trust in God and not to live in
fear. Two months later, we announced we were expecting our 3rd baby.
Life was exciting, the pregnancy again was easy, and we could not wait to have
another baby.
Around 5
months, we decided to have a fetal echo, “just to make sure”. After about 45
minutes, we both could tell something was wrong…I honestly do not remember the
next three days, how we got home from Dallas, or what the doctors told us, but
our 3rd baby girl was going to be born with a heart defect that
would need open heart surgery as well.
A completely different defect called
Transposition of the Great Arteries. The two main arteries in the heart that
were supposed to cross to transport blood from one side of the heart to the
other, did not cross. Elizabeth’s organs would not get any oxygen without this
surgery.
2 little
girls with open heart surgery 15 months apart! Right then I knew what it felt
like to be happy and heartbroken at the exact same time. Again, I cried, I
blamed myself, and I often asked “why me?”
Elizabeth’s
defect was a little more severe, but also one that could be fixed. So on
October 1st, 2014 I moved to Dallas, 8 days later Elizabeth made her
debut. She too looked amazing! The third Lane girl born with a head full of
thick brown hair just like Chris. The staff at UTSW put her on life support,
and she and Chris took the quick ambulance ride down the street to Children’s.
At six days old, and 5 pounds 10 ounces, she went into surgery. The entire
surgery lasted around 10 hours, 4 of which her heart was stopped and she was
placed on heart and lung bypass machine. We spent the next 20 days in the exact
same CICU room and another 10 on the regular floor. Chris was flying back and
forth from Lubbock to Dallas, trying to keep Emma and Ellie’s routine going as best
we could. After a very long and lonely month, it was time to go home! I missed
Chris, and the big girls. I just wanted our family of five together, and it was
the best reunion ever. Our family was happy, healthy, and complete!
I mentioned
that I often wondered “why me,” but I now know why. 1 in 100 babies are born
with heart defects, there is no rhyme or reason, it just happens, and many go
undetected even after birth, until it is too late. Like us, many families know
nothing about Congenital Heart Defects before being thrown into this world. It
is our goal that our story can give comfort and hope to many other families
along the way.
We thank you
from the bottom of our hearts for coming tonight, and for supporting the March
of Dimes. You are the reason our babies were given a fighting chance. You are
the reason families like us have hope for the future. Thank you for opening
your hearts tonight and helping the March of Dimes continue its research for
babies just like Ellie and Elizabeth. We have faith that one day families will not
have to go through the heartbreak that is CHD, but until then, we will continue
to give families hope for a future.
Mandel Family
Family Story Assets (Word Document, Photos)
Click here to download
Click here to download
Vitals:
Maxie was born weighing 2 pounds and 4 ounces, and she
was in the NICU for almost 11 weeks.
Interventions:
She had apnea and jaundice and needed to gain weight. She was diagnosed with bilateral
cleft palate. At 6 months old, she had facial reconstructive surgery. At home Maxie
got early intervention services, including OT/PT and orthotics for her shoes.
She had RSV when she was less than a year old, and now she has virus-induced
asthma; she also has reflux.
Mandel Family Story
I had a “perfect pregnancy” with no known complications until
5 days before Maxie was born. That’s when I started experiencing a lot of
pressure and contractions—I thought it was Braxton Hicks. It was my first child,
and I have a high pain tolerance, so I wasn’t thinking about how serious it
could be. I didn’t get any education in advance about the signs and symptoms of
premature birth or what to do.
I called my doctor, who said to drink a lot, watch for blood
and rest. I noticed some spotting, so I called my
doctor again and went into the office, at which point they sent me to the
hospital. I was 4 cm dilated, and Maxie was in the breech position—there was a
95 percent chance she would be born that week. I was on bed rest in the
hospital for 5 days trying to stop the contractions. While on bed rest, I got
a shot to help make surfactant—the timing of the shot was important.
The head neonatologist gave my husband and I literature with
general stats about the stage that we were in, and the NICU staff gave us March
of Dimes materials. We were trying to stay positive, and the neonatologist told
us that every day Maxie stayed in mattered. We also received sobering
information about what to expect, and at one point, I didn’t want to have the
baby because I was so scared.
I was still feeling extreme pressure while having
contractions and she was still breech. On my fifth day of bedrest, they
recommended having an emergency c-section. Maxie
was born prematurely at 27 weeks, weighing 2 pounds and 4 ounces, and she was
in the NICU for almost 11 weeks. She had apnea and jaundice
and needed to gain weight. She didn’t have any surgeries while she was in the
NICU, but I thought her mouth looked too big and noticed that she had trouble
making a seal.
I felt a loss of control as a parent in the
NICU wanting to feed my daughter but not really having that power. One
neonatologist let me stay overnight and nurse her; it was successful, but I
still felt there was something about the way the breast/mouth fit that wasn’t
right. The doctors felt it was unrelated, and she had genetic testing that
didn’t turn up anything. I was told there was nothing to be worried about. I
took her to a specialist and she was diagnosed with bilateral cleft palate—her
mouth was too open on the sides. When Maxie was about 4 months old I took her
to a plastic surgeon and at 6 months old, she had facial reconstructive
surgery.
Maxie qualified for OT/PT through the local
IU as soon as she came home from the NICU. She received those services and was
followed by a development specialist through the third grade. She needed
orthotics to support muscle development and proper movement patterns—she still
wears orthotics today, though different ones than those little booties! Maxie
had RSV when she was less than a year old, and now she has virus-induced
asthma; she also has reflux.
Maxie has a younger brother, Leo, who is 11
years old. Because of my experience with Maxie, I went to a high-risk doctor
from the start when I was pregnant with Leo. He was born prematurely at 34
weeks. Years later, I had blood work that revealed I can’t break down b-vitamin
and folate.
Brummond Family
Elijah Brummond
(added 030419)
Elijah was born 11:13am
on October 14, 2013; weighing 15.2 ounces and was 11.5 inches long, and he made
it to viability at 25+4 weeks. I can remember him being rushed away.
I didn't get to see him after he was born,
Elijah's journey has
been nothing short of an absolute miracle. With less than a 5% chance to
even make it into this world alive, has shown us the fighting strength of life,
and the power of God and prayer.
Elijah's Journey started off with my
husband Bill and myself trying to get pregnant, which for the norm would would
be your average run on the mill, but for us not so much. We tried for a
few years with no success, even with the help of Clomid, my OBGYN referred us
over to fertility to take a look at both of us to find out why we were not able
to get conceive.
They tested Bill all was fabulous on his end, and then
came my testing, yes not so great on my end. I found out that my
tubes were blocked due to a bicornuate uterus and some other issues due to my
already complicated history with type one diabetes and neuromuscular issues of
my own.
I had a procedure to try to unblock my tubes; which was almost
unsuccessful but at the last minute they were able to sneak a tiny amount
of dye through. The fertility specialist offered a complex surgery to fix
the uterus and fix the tubes and he also offered a run of a Chemo drug that
they had success with pregnancy. We opted on the Chemo drug and did two
full rounds of that.
On the second round low and behold a miracle
appeared. I had no idea I was pregnant for the first couple of months and
was in utter shock when we found out that we had finally conceived. The
pregnancy was rough.
Being a type one diabetic on a pump the struggle
became a fight of low blood sugars, horrible night sickness, extremely high
blood pressure, kidney issues and excessive bleeding and early dilation; which
put me on bed rest at Froedtert on critical.
We also had issues with being able
to tell the sex of Elijah and the heavy genetic testing started with all of the
other testing that was going on. They started me on hormones right away to keep
Elijah in utero as long as possible. I entered the hospital at 22.5 weeks.
With the problems still persisting, I had around the clock monitoring,
Elijah was struggling.
His atmosphere in womb was not good. His
cord had collapsed around week 17, so his growth had stopped his sack was full
of CO2 due to the cord collapse, and he had developed End diastolic flow which
is a heart beat issue and can result in fetal death at anytime if his cord
completely fails. He also had IUGR which restricted is availability to grow in
utero.
This became a scary time and something very hard to take in when
thats all you dreamed of was having a little family and now it a matter of life
and death.
The team of
specialist came in the night of Oct.13th and told us that the likely hood of
him being alive at birth wasn't good. I knew in the back of my mind God would
carry us through this journey.
He didn't let Elijah struggle this much,
and not make into this world alive. By this time I was already having
contractions; which they tried to stop with a few different medications, with
no luck. A
fter the team finally left my husband finally went home to get
a good night sleep; which to his surprise he would be getting a call an hour
later to return. Elijah wasn't doing well, I wasn't doing well and he
needed to come out NOW. This was at 2:30 in the morning. Bill
rushed back to the hospital my parents met him there shortly after, they had me
prepped and ready.
My GYN was constantly monitoring him and myself
and they decided to wait a big longer to get medication in me to help him
so there was a less likely chance of birth defects. Those meds were started
and we were able to wait till 11:13am on Oct 14,2013 which was a
beautiful sunny Monday morning; they did one last monitoring and Elijah
heart beat was down to basically nothing, I was rushed off for an emergency
C-section and prayed for the best outcome.
I was not fully numbed when
they started and I really didn't care he needed to come out now. I needed
to be awake for the procedure because they were afraid if they put me under one
of us wouldn't make it.
Elijah was born 11:13am
on October 14, 2013; weighing 15.2 ounces and was 11.5 inches long, and he made
it to viability at 25+4 weeks.
I can remember him being rushed away.
I didn't get to see him after he was born, Children's was now on a fight
to save his life. Not able to breath on his own, Elijah required the
smallest breathing tube Children's had ever used at that time. It took
multiple times before they could get him initiated and stable.
Our lives were in
for a major change. Elijah had many major complications when he was born,
but the one thing that was amazing is that you were never alone during the
process. Angie from March of Dimes stood by our side along with all of
the amazing physicians and teams of social work and organizations and amazing
nurses, that helped us understand everything and get through what was going to
be our new life, and also the support of family was huge.
Elijah's
complications started with the requirement of a vent for breathing; which he
didn't like and showed the doctors multiple times on how he could pull out his
breathing tube; which landed him on Nitric oxide for breathing. He had a
PDA and a PFO ,which needed to be fixed on Halloween morning; Children's
cardiology department was awesome, they told us that he was to small for the
surgery and there was a chance that if they opened him they may not be able to
fix what they had to fix and he would pass but they were able to put clips in
his heart and also fix the hole that was there as well.
Of course we had
complications with that he didn't want to come out of anesthesia. He also
had issues with all of his blood gasses and he was very touch and go for over a
week. He also has a massive scar across shoulder blade where they had to go in
because he didn't have enough skin and it also wasn't thick enough to touch with
a scalpel. We also had issues of his kidney shutting down which caused
him to go into urinary sepsis, because he wasn't able to pass urine.
Elijah was born with severe hypospadias (birth defect of his genitals)
which made it impossible to catheterize him. He also was born with BPD, hypo
tension and severe Chronic lung disease that has required monitoring and major
interventions even to this day.
He was also born with the inability to
control his glucose levels because he was getting my insulin doses in utero so
he came out dependent on high levels of insulin. He had a very odd shaped
small head due to the IUGR so they watch him for water on the brain. He also
had ROP which was damage to his retinas from being on a vent for long periods
of time and needed surgery for that as well, along with constant eye exams.
He had multiple arterial lines to deliver tons of medications.
With
arterial lines can be major complications like loss of circulation to a limb,
infection and a many other things. Elijah had to be one of the rare
children that of course lost circulation to his hand and arm. He ended up
loosing 1/2 of his thumb in the process.
Elijah had multiple blood and
plasma transfusions because he wasn't able to hold his counts up to sustain
his little body. He also had a milk donor that helped us for a short time
till they found out he had a major milk protein allergy.
On the week of
Christmas our nurses spotted the fact that Elijah had more than one hernia.
So as the week went on we watched and waited again. Sure enough he
had a few and was rushed off into surgery again because one of the bigger
hernias was strangulated causing him not to be able to pass feces and caused a
massive back up in his system. This was only the start of the list of
problems.
One of the biggest issues was in January when they spotted a
brain bleed; which is common in these children due to tramatic births.
Little did we know this would affect his entire rest of his life and
would make his life much more complex.
After a while of NICU
life you become accustomed to the sounds of alarms, the sounds of all the array
of breathing machines, and sounds of daily rounds, where you hear the progress
of your child, you become great friends with your nurses and doctors. You
become a family.
You learn the transition of breathing apparatus, you
learn the transition of graduations of bedding; which is a big deal as your
little one grows, you learn the transition from naked baby, to diapered baby,
to partially clothed baby, to yay we can wear cloths. You learn the bathing and
daily cares process, and how to work all the machines your little one is
attached to and may need to go home with. We spent hours up there learning
because we wanted to be the best that we could be for him.
On Feb.7,2013 Elijah
finally got to come home. We were so excited, it was a cold and snowy
morning. The nursery was set up with all of his supplies; he came home on
an NG tube and oxygen and pulse ox machine and a apnea monitor. We were
elated.
Later that night Elijah was having issues breathing and a 911
call had to be made to bring him back into the NICU.
Come to find out his
oxygen concentrator they gave us wasn't made for his size and wasn't delivering
what he needed. He returned back to the NICU for another 2.5 weeks.
Which would make it 130 day stay at this point. We finally were
released to come home for the second time on the 21st of February.
We
were for once a family all under one roof. Elijah had therapy at home;
PT, OT, speech weekly we followed with multiple specialists as he continued to
grow, but there was note that he was way behind and not meeting his normal
bench marks and no idea why.
At two Elijah was so far
behind and he was being worked with constantly. We were now at that point
where we were going to specialized therapy PT, OT , Speech out at New Berlin
Therapies and not seeing tons of progress. Back to the Neurologist we
went. Elijah was diagnosed with Spastic Ataxic Cerebral palsy and we were
told he may never walk or crawl.
They also said he was some where on the
autism spectrum. Bill I a were devastated that would never walk on his
own or be able to to crawl or get around. His legs were heavily braced
and Elijah was not willing to give up. He taught himself how to crawl his
own way with his arms facing his body and more of a drag but he got around to
where he wanted to go.
At the age of three
Elijah shocked us one evening and pulled his little body up on his cube chair
and stood up on his own. We took videos we were shocked. For the
little boy they said would never walk or crawl he had just stood. From standing
for short periods of time and with the help from therapy Elijah had gained
confidence to attempt to try to walk.
Slow but sure he made progress and
started taking one step at a time to us. Limitations were not going to be
in his vocabulary. He also began to finger feed with help. Small items like
cheerios and crackers and advancing into regular food with help became part of
his routine.
He still was bottle fed with formula to hold his nutrition.
He had goals set for himself that know one would ever know because he is
non verbal but we could tell this child had the mind to conquer the world. In
April of age three we got the phone that would explain why Elijah wasn't making
the leaps and bounds he should at his age. He was diagnosed with an
extremely rare genetic disorder that would leave him being one of 6 known cases
ever in the world.
This rocked our world. To this day we still
don't know know much about what he has and know that it does cause him to be
globally delayed and intellectually different. But this makes him that
much more of a miracle! To know that he should have never made it past
birth and here he is doing what he can do.
Age four was a hard year
for Elijah, we were noticing him not being able to focus, and realized his CVI
vision impairment had left Elijah legally blind in both eyes as well as only
being able to see certain colors.
He was also having issues with being
able to know if he was hungry or full, this is from damage from the brain bleed
(stroke). He also was cursed with many infections through the year which
made him drop weight that he needed to keep on. The doctors at this point
decided it would be best to put a G-tube in for nutrition as he wasn't able to
intake enough without help of a tube.
The decision was also made to take
out his adenoids and put in tubes because he has struggled with constant
infections. Elijah has severe Chronic lung disease and a CVT vest was
ordered to help keep his lung clear as the year went on. Elijah struggled
with an infection after surgery and was able to climb the obstacle of his new
life with a tube. On the flip side of the negative things he has
increased his mobility quite a bit, he is up and walking short amounts; he
loves climb and be adventurous, and has really developed quite a little
personality that makes him shine.
He has also picked up a few new skills
on starting to want to pick some things out whether it be food or something he
wants to play with. He truly loves life even when he has had obstacles the
entire way through it.
We have come into year
five smiling and ready for another year, and we will see what this year brings.
Hopefully tons of development, and happiness as he thrives, and does his best
to be who he is.
Children's Hospital of Wisconsin, and March of Dimes has
stood with Elijah each step of the way from the NICU, to taking time to support
Elijah in all of his endeavors from some of his very very special doctors even
paying a special visit after surgery. From the many many specialist we
see at Children's Hospital to the Constant support of March of Dimes as he
grows these organizations are top notch.
We truly have been
blessed with one of the most beautiful miracles a person can receive; the life
of a child.