Brendan B. McGinnis Congenital CMV Foundation main page

Public Awareness and Vaccine Research Support. Working Together to Eradicate Congenital CMV Disease.
Member of the External Partner Group, in conjunction with the National Center on Birth Defects and Developmental
Disabilities (NCBDDD) and the Centers for Disease Control and Prevention (CDC)

Brendan B. McGinnis Congenital CMV Foundation |

The Brendan B. McGinnis Congenital CMV Foundation is a non-profit 501 (c) (3) dedicated to The
Brendan B. McGinnis Congenital CMV Foundation is a non-profit 501 (c) (3) dedicated to for CMV,
and to affect change in the medical community so that physicians will begin to test women raising
public awareness about congenital CMV, to raise donations to support research for a vaccine for
CMV prior to pregnancy. Ultimately, our mission is to save babies yet to be born from suffering the
often devastating consequences of congenital CMV by eradicating this common but potentially
life-altering virus.

In Loving Memory of...

I would like to first say that there is nothing wrong with Jayden, he is perfect!

However, he does have many medical issues and he is terminally ill. He was placed onto the Pediatric
Hospice Program in 2008. He is still on the Pediatric Hospice today which is why my husband and I
were required to pre plan his funeral leaving out the date of course but plan everything down to the
music, cemetery and casket (easier said than done!). He has had 6 surgeries within a years time and
requires a private home nurse 12 hours a day, multiple meds, VNS pacemaker,
g-tube and medical equipment to keep him alive.

I went into pre-term labor and was sent to high risk OB who found on an ultrasound severe brain
damage to our baby. Jayden was born almost 2 months early, January 17th in 2008, after over 36
hours of labor. He weighed 3lb 11oz and was 15 and 1/4in tall. He was immediately taken to the
NICU and was put through multiple tests. My husband and I found out that night that our son had
cCMV (congenital Cytomegalovirus). Over the next couple of days Jayden had many more tests
done. Jayden's brain is filled with fluid and he has calcifications all over and around. He has
microcephaly, a small head (head circumference is not even on the charts and haven't been since
birth). Weight wise, he is now 24lbs and 35.5in tall (10-15% on growth chart) which is considered
pretty small for his age but no matter what they try they cant get him to grow at a normal rate.
They assume his inability to grow weight wise, even with the help of high calorie foods, is because of
all he goes through daily. He uses a lot of energy when he is awake doing simple things like kicking
his legs so he burns a good amount of calories. At least he is growing at a steady rate for himself!

Seizure activity was picked up from day one on EEG, his seizures were not visible until he was 7
months old though he was having them internally. He had to receive multiple blood transfusions and
medications. He had an enlarged liver and enlarged spleen. He had extreme billiruben and required
special light therapy for about 2 weeks. He required oxygen since day of birth and continued
needing it until he was 9 months old. He failed both the hearing a vision screen initially and this was
confirmed over the past two years. He is deaf/blind, not fully either but almost fully deaf and he is
cortically blind meaning he only sees light. He was unable to eat orally and used a NG tube for the
first couple of weeks but progressed to food and a sippy cup by 9 months old,
yes we got him off a bottle at 9 months old!

Jayden came home after almost a month in the NICU but was seen daily by one of his specialized
doctors for his first year of life, we traveled/still travel all over Colorado to the best specialists for just
about each body part and he has the most amazing pediatrician ever! He was hospitalized many
times over the next few months and had many close calls. One in particular was because of a 2 hour
seizure that 5 doctors and 6-7 other nurses/air life were unable to control. He ended up with a
central line sewn into his groin and the seizure was stopped. The paramedics and firemedics who
rushed him to the hospital stayed with us the hour it took them to revive him. Since, he experiences
50-100 seizures daily and is on 3 different medications plus a VNS pacemaker that
sends continuous electric shock to his brain.

In November 2008, Jayden was placed into the Pediatric Hospice Waiver Program and last year we
had to pre-plan his funeral. This program allows him to stay at home with a private nurse on duty
up to 14 hours daily/7 days a week. He has a DNR which says he will not have to suffer from broken
ribs due to CPR or invasive measures like a Trach or life support. The new goal has become keeping
him comfortable and as happy as possible. He is nonverbal, he yells and babbles but is unable to talk.
He smiles all the time and laughs at funny noises! (the noises and talking has to be loud for him to
hear so our house is a very loud place to be!) He has Spastic Cerebral Palsy and is unable to walk,
hold his head up or control most of his body. He is wheelchair bound and requires help with
everything similar to that of a baby only he is an almost 3 year old child.

In July 2009, Jayden had to have a Tonsillectomy and an Adenoidectomy because of breathing
issues and recovery lasted about a month in-hospital stay and lead to 3 other surgeries. Jayden did
not recover well and he stopped eating, swallowing and sucking. He had to have surgery on his
tummy for gastric emptying issues (Pyloroplasty), a Nissen placed for severe reflux and a G-Tube
placed so he can eat. He was fed by NG tube for the first 2 weeks in the hospital after recovery gone
wrong and he did not look like he was coming out alive. Every day his doctors would come into his
room with a terrified look on there faces but it wasn't until he was fully recovered from the G-tube,
Nissen and Pyloroplasty that they told us if we had not done the last 3 surgeries he would not have
lived. It has been a year and a half since the 5 surgeries of July and Jayden still does not take
anything by mouth. We can randomly give him a few licks of something but most of the time we
regret it because he ends up choking. He has respiratory distress spells often. During these spells he
stops breathing and gags as he tries to catch his breath. We are unsure why he does this but he
does a few times a week. We have been lucky that he has brought himself through but we never
know. We are helpless as we hold him trying to get him to breath. He turns red and blue and goes
limp but by some luck he brings himself through. He always cries after these spells and it is
heartbreaking. He did not cry as a baby, for almost a year we thought he was mute. He had blood
drawn and shots given monthly and he wouldn't make a peep. He is very loud now! He does not
talk but he sure can yell! He still doesn't react much to shots and blood draws but this is probably
because the pain he deals with daily is far worse than a needle prick.

He is currently on 13-15 doses of medication daily (two stomach meds, 3 seizure meds, 2 sleep
meds) and each of these keep him alive. He also has inhalers for emergencies with respiratory issues.
Doctor wise, he has about 7 he sees regularly (monthly) and a handful he sees on yearly follow-ups.
His having a private nurse has cut his appointments a lot since she can do his check ups daily and
send a report when necessary.

Jayden was recently sent to Give Kids the World Village in Orlando, Florida on a Make a Wish trip to
Disney World. The Village is a resort for terminally ill kids. It was an amazing place to be and Jayden
enjoyed his trip to Disney World, Universal and Sea World! We are unsure of what each day will
bring. Every morning we wake up unsure if Jayden will wake up. His happiness is our main priority!
He smiles almost everyday but his 50-100 seizures take a toll on him.
His neurologists say "each seizure, whether a minute or hour, is time off his life".

January marks his 3rd birthday and a new adventure. He may start preschool at a special needs
school! Cognitively he is stuck at a 3 months state which basically means he mentally is still a baby.
He does not develop much and he has been unsuccessful with learning much. School for him will
consist of physical and occupational therapy over 3 hours/4 days a week. His daily routine is he
yells, smiles, seizes, receives physical and occupational therapy and loves being held! An interesting
question was asked. Have I ever asked why me?? No, but I always ask, Why Jayden? Why does he
suffer so much each day? Why is he so sick that he has to be placed onto the Pediatric Hospice?
Why are these poor children born to die? We are all born to die, but I would much rather an adult
who has lived their life go before these innocent children. Under the Hospice program my husband
and I had to pre-plan our 2 year old son's funeral and were made to pick out a casket. No parent
wants to do that or should have to go through this for their child!!

I have learned to cope with the reality of things but it kills me to see my baby boy in so much pain
and unable to communicate what is wrong. It saddens me to think he will never experience many
things as we do. He is deaf and blind and with severe CP he is unable to move much or even sit up
and support his head and its heartbreaking to think of how scary that must be for him. He is so
fragile and dependent on us. He gets so scared at times and we cannot help much other then just
holding him close. He seizes 50+ times a day even with 3 meds and a VNS pacemaker and the look
he has on his face is heartbreaking. He wants help and we can't give it. He is in pain and we can't
take it away. I feel for my child and all he goes through. I ask why him but I believe we were given
him for a reason. I keep him by my side as much as possible but even with every smile I get
a little choked up knowing there is pain behind it that we can't take away.
There is so much I have missed but this was kind of a short story!

New updates(2-15-11): Jayden had two dislocated hips, no surgery because of his health it would
not be worth the pain of recovery, he has an injured arm and he is having blood sugar issues. His
levels shoot from one extreme to the other in a matter of an hour or two which gives indication of a
worse issue going on....He is sleeping much of the day away and is clearly in pain at times. We are
keeping him close and cherishing any good days he has. School was denied by his doctor for health
reasons so he never got to begin preschool at the special needs school as planned.

New update:(8-15-11) Jayden began to get worse starting in December of 2010. This continued
and worsened over each following month. June 2011 he had gotten so bad that he was switched
from the Hospice Waiver to full Hospice in home. Feed issues worsened and got to a point where we
could no longer force G-tube feeds. He went 24 days total without food. He dropped 7 lbs within
weeks. Down from 27 lb to 20 lb( almost 30% body weight). During those 24 days he was put on
an intense pain management regimen to ensure his comfort. His stomach and digestive system were
the first to shut down which was the cause of his rejection of feeds. His lungs began to fill with fluid
at about 10 days without food causing labored breathing and apnea, every few breaths lasting
45-60 seconds at a time. This worsened. His kidneys shut down around 16 days without food. His
circulatory system began to fail around 20 days without food. The next day he could no longer take
meds through stomach so we had to put pain meds through mouth, which he has not been able to
take anything by mouth in years without gagging. He took the meds fine.
His doctor and Hospice team could not believe that he was still holding on all odds against.
He slept straight through to the 24th day.

On the 24th day, August 13, 2011, he refused to take pain meds at all. The day seemed long. His
breathing was labored and fluid was bubbling through mouth all day long. Still sleeping and seeming
peaceful. At 7:55pm he woke up gagging on his saliva. My husband picked him up and tried to help
him clear airway. By this time we could tell it was fluid filling his lungs that we would not be able to
clear. I took him and held him. He was drowning in the fluid from his body. We could hear the
bubbling noise as he tried to breath in and out. The fluid seemed to fill more and more. He looked so
terrified. Eyes wide open for the first time in weeks. He was reaching as he tried to pull in air. His
lungs would not allow any oxygen in. We held him close and told him that it was OK to go. We told
him how much we love him and how much he deserves to be in peace. He has worked for so many
years to stay strong for us and now it is time for us to be strong for him. We look down at one
point and see his 3 month old baby brother holding his arm and rubbing it.

Five minutes pass and he is still fighting for his life. He deserved so much more. He deserved a
peaceful death. He deserved a peaceful life but he was not given that either. We were so helpless as
we tried to help him but could not do anything to help. No amount of suctioning could stop fluid
filling his lungs. Kidney failure caused this to happen and there was no way to help. At 8:05pm he
relaxed and stopped fighting. At 8:06pm his heart stopped. I closed his eyes and just held him.
While waiting for the Hospice nurses to come we cleaned him all up and dressed him in his favorite
PJ's and blanket. Called and spoke with his doctor for a few minutes and then the process began.
People coming and being called. The mortuary sent two of their best people to pick him up. They
had the sweetest bed with blankets and bears in the back of their van, which looked just like our van
so it was a definite comfort. My husband carried him out and we said goodbye.

We have not seen him since Saturday. Very anxious to see him Wednesday to dress him! We will be
able to see him as much as we want up until the end of the funeral of course. Still in shock and not
sure how I feel about everything but we are taking it one day at a time. We have so much to do
this week and are getting things together to honor him as best we can! He deserved so much more
during his life in terms of all the suffering he went through but he especially deserved more in the
end. He was such a fighter! So strong and brave! So full of love and smiles! He will be forever missed.
There is a huge hole in the lives of many, especially ours which was focused fully on him. He had a
lot of struggles but his happiness and smiles throughout it all were an inspiration. He would never
sulk or fuss. He would just try harder to smile! The strength he has is just beyond what words can
describe. Not many adults could have dealt with the things our 3 year old could and did.
He is at peace now. He is whole and healthy! He is our Angel!

Rest In Peace our son! 1-17-08 to 8-13-11

Submitted by his mom, Karina

Jayden
January 17, 2008 - August 13, 2011