Annotated Reading on Parents With Infants Who Suffered SIDS and Hydrocephalus

1ulian's story, how SIDS took his life and changed ours on December 6, 2004.
We were blessed with a happy, bouncy, baby boy we named Julian Jamaal Alexander. We Iirst noticed his cry,
his soIt eyes, the way he smelled, and his beautiIul hair. Julian loved to eat and loved to sleep. We nicknamed
him Iat-Iat since he got so big so Iast. He had a smile that would light up a room and a coo that just melt your
heart. He was a joy to see aIter a hard day, his giggle made everything okay He motivated us to be better and do
more.
The morning oI March 24, 2005 changed our lives Iorever. We woke at 7:33am to Iind our precious baby lying
in bed and what we thought was sleeping. We went to move 1ulian to find he wasn't breathing. We
perIormed C.P.R., as we were both certiIied and called 911. The ambulance came and paramedics took our
baby. We rushed to the local hospital and upon our arrival a nurse sat us down. She said "Im sorry, but he is
gone" our hearts cracked, tears Iell, and emotions went wild. We were taken to a cold, dark room and saw our
baby liIeless little body laying there. We took him together in our arms and held him and cried. We were so
conIused and didn't know what happened, how, and most oI all why. Anger set in and so did guiltiness, we
blamed ourselves we questioned god and we pointed Iingers. (Common reaction of parents with children who
died of SIDS)
Julian was buried March 29, 2005 his service was beautiIul, Iit Ior a little prince. We never noticed how many
lives he touched until that day. There were so many people; Iamily, extended Iamily, Iriends, colleagues, and
many others who just wanted to say a last goodbye. We talked about it everyday aIter his death, in the back oI
our minds it was always there, but when we received his autopsy report we were speechless. It read: cause oI
death sudden inIant death syndrome. (def The unexpected and sudden death of an apparently normal and
healthy infant that occurs during sleep and with no physical or autopsic evidence of disease.) We became
S.I.D.S parents and our angel was a victim oI S.I.D.S.
We were aware oI S.I.D.S Irom a close Iriend oI ours whom lost their child years beIore. But like many we
were naive, we thought "this couldn't happen to us". We slept with our Iirst child next to us and he survived so
there was no doubt in our minds, we assumed Julian would be Iine. We were uneducated then to this monster
called S.I.D.S, so we started attending meetings and reading more on it. We took action to learn and educate
others. We wanted to know what took our baby. We wanted to help others protect their babies. We express our
emotions to all that will hear.
In the 1990's the "saIe sleep" campaign was going on. We were young then, children ourselves, and didn't know
what that was about. Now as adults and parents ourselves we want to reach out to our peers. Many young
parents don't know about or even remember the "saIe sleep" campaign. We want to get the word out to our
generation about S.I.D.S, the correct "room sharing" guidelines, and how they can protect their children.
Jonathan and Bridgette Alexander,
Parents of Julian Jamaal Alexander
Taken Irom The SIMON Project website




abriel`s Story
by Leilani Schweitzer

In some ways, it Ieels like Gabriel was never really here. He always seemed to be halI-way to another place.
But I know he was, Ior I miss him now.

The ood Times

When I was seven months pregnant a doctor told me I would be lucky iI Gabriel lived to be born. That
prognosis (def An estimate of the future of someone, especially about whether a patient will recover from an
illness or not) did not sound very lucky to me, and the words sent me into three weeks oI the darkest gloom I
have ever experienced. Despite the prognosis, I was lucky. Gabriel was born Iour weeks early on December 22,
2003. He was small, cute, and wonderIul. He looked a lot like his sister. The doctors originally told us he would
be a she. Amazing how quickly things turned Irom pink to blue!

AIter his birth Gabriel spent 15 days in the intensive care unit. I remember hearing 'White Christmas on the
radio while I sat next to his incubator. He was one oI the biggest kids in there, and happily he didn`t need much
attention Irom the buzzing nurses. There were the standard weighings, Ieedings, changings and lots oI positive
opinions Irom the doctors.

When Gabriel was three months old he was diagnosed with hydrocephalus (def A pathologic condition
characteri:ed by an abnormal accumulation of cerebrospinal fluid, usually under increased pressure, within the
cranial vault and subsequent dilation of the ventricles). Three days later he had surgery to place a shunt (def A
tube or device implanted in the body to redirect a body fluid from the cavity or vessel to another) in his brain,
and he sailed through that with no complications. The doctors told us he could never wrestle, play soccer or
Iootball, but Ior me, being the consummate optimist that I am was glad to think he could never be draIted.

The next sixteen months were pretty normal baby raising days bottles, diapers, laundry, smiling, crawling, and
playing. Christi, Gabe`s physical therapist, visited every week. She was always excited about his progress and
assured me he was her cutest client. He charmed a lot oI people. He didn`t care who was holding or playing
with him and was happy wherever he went. His vision was not so great, but considering the Iirst prognosis, that
Ielt like a small obstacle.
I didn`t think much about his shunt. I could Ieel it under his thick hair, as well as the thin tube down the side oI
his neck, but the doctor`s advice regarding the shunt was straightIorward try not to bump it and iI he starts
throwing up take him to the ER.

The Warning Signs

On Thursday, August 18 he started throwing up. A lot. I took him to the ER at Washoe Medical Center in Reno,
NV (now named Renown Health), held him down Ior x-rays, and wrapped him up Ior the CT scan. The nurses
gave me a t-shirt since mine was covered in vomit. The CT scans showed no change in the size oI his ventricles,
so possible problems with the shunt were disregarded. Our pediatrician diagnosed it as a stomach virus,
admitted him to the hospital, and we stayed there Ior three days. During that time there were peaks and valleys.
He would Ieel good, crawl around the hallways with an IV in his hand, and then suddenly be sick again. We leIt
the hospital on Saturday.

When we got home Gabriel was okay Ior awhile, but then he Iell asleep. He slept and slept and slept. I could
barely get him to wake up. The doctor said he was hypoglycemic (def Pertaining to or resembling a state of low
blood glucose level) Irom not eating, and he would be better soon. But then he slept all day on Sunday as well.
He Iinally woke up when I put him in a cold bath. He must have Ielt like hell, but he still smiled and splashed in
the water.

I was looking Iorward to the Iact that Gabriel had an appointment with his neurosurgeon on Monday. It had
been scheduled Ior months, and I was anxious to get some real inIo Irom someone I trusted. Gabriel was really
sick when we went to see Dr. Edwards. His Iirst words when he saw him were, 'hy didnt anyone call me? I
wasn`t sure how to answer him.
Dr. Edwards immediately started making calls to get Gabriel into Lucile Packard Children`s Hospital in Palo
Alto, CaliIornia. I started calling to make arrangements to be gone Ior a week. We Iinally arrived in Palo Alto,
and, I was so relieved to be there. I was glad to be in a place where we could really assess the situation and
hopeIully things would get better.

But diIIicult hours would Iollow. There would be more doctors, nurses, paperwork, and multiple attempts to get
an IV into his dehydrated little arm. It was nothing but awIul; and then it was late. I thanked the nurse when she
turned oII the noisy alarms on Gabriel`s monitors. Eventually, everybody went to sleep. Suddenly I was awake.
I remember so clearly the nurse grabbing the Ioot rest oI the turquoise recliner, swinging me around saying,
'Leilani, you have to get up! Immediately the room was Iull oI people. ode Blue blared Irom the intercom.
Someone pulled me out oI the room. The staII`s optimistic words were betrayed by their devastated Iaces. I
knew Gabriel was gone.

Twenty-Iour hours aIter being jolted Irom the recliner I told the doctors to stop. The terrible morphed into the
surreal as we made plans to move his body. We signed death certiIicates and agreed to donate his heart valves
and bones. Arthritis researchers need the bones oI children under two it is hard to imagine a darker art. Later
we would learn his shunt had Iailed, and his brain had herniated (def Pertaining to a tear or abnormal bulge of
an organ or organ part through a retaining tissue) . The pressure was so great in his head that the brain was
pushed out oI the bottom oI his skull. Gabriel died on August 23, 2005.

By Thursday, we were back in Reno. Flowers arrived non-stop, Iriends and Iamily Ilew in Irom everywhere. On
Saturday, the Iuneral was held in the garden at Carmel oI Reno, the same place Gabriel was baptized exactly
three weeks beIore. There were balloons, bubbles and kids running around. Everything was appropriate and
lovely; and completely horrible.

I don`t remember much about the Iollowing days and weeks. Eventually the bouquets withered, the mailbox
oIIered no more cards, and I started to get angry (Common reaction of parents with children who died of young
age). I started talking to doctors, Iriends, and other mothers about what had happened. I learned a lot about
hydrocephalus that I had never known. Then I got angrier. It became clear that I had been very uninIormed and
uneducated about the condition that had killed my son.

Taken Irom Gabriel`s LiIe website, http://gabrielsliIe.org/2010/09/03/gabriels-story/








Silliman University
ollege of Nursing
Dumaguete ity

Att0TATF0 RFA0lt6 0t
PARFtTS wlTH ltFAtTS wH0
SuFFFRF0 Sl0S At0 HY0R0CFPHAluS

Submitted to:
Asst. ProI. Venus Fabella-Monroy

Submitted by:
NCM 102 - Section C4
Binaoro, Carleen O.
Carpitanos, Pauleen Marie SU.
Enguito, Fretzie O.
Lantajo, Wingela Hazel R.
Malinao, Diane Mae D.
Melon, Kaycee L.
Palma, Mary Wendy E.
Ramos, Michelle L.
Roque, Lorette Diane C.
Suasin, Joanna Marie E.
Tumacole, JhuIel T.
Yap, Gwyn Mark C.


March 5, 2011