Every
year in the United States, thousands of infants are born before they have had a full
forty weeks to develop and grow within the womb. Over 11% of the total number of
births each year in the U.S. are premature births. Prematurely born infants are deprived
of the final weeks within the shelter and warmth of their mother's body where they
are able to thrive, develop and gain weight crucial to their survival. When babies
are born too soon, they struggle to fight against many life-threatening conditions
such as lung problems, brain hemorrhages, bowel problems, low birthweight, heart
conditions. These are only a few of the problems that premature infants are forced
to overcome in order to survive. There are a multitude of conditions and diseases
that can complicate and even take the lives of premature infants. Even after preemies
leave the special care nursery in the hospital, the fight is not over. The majority
of premature children who graduate from the neonatal unit require special at-home
monitoring, oxygen supplements, extensive follow-up care, physical and speech therapies
and special early intervention programs.
A premature birth can devastate a
family, both emotionally and financially. When a preemie is born, parents are often
faced with difficult decisions that will effect the rest of their lives. Parents
need emotional support, resources, guidance and assistance.
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Our mission is to assist parents, healthcare
professionals and the public in providing the best possible care for premature infants
and children. We plan to do this in the following ways:
1) Raising public
and political awareness of the problems facing prematurely-born infants.
2)
Educating parents and caregivers of the problems that premature infants face and
ways in which the problems can be foreseen and handled.
3) Providing educational
programs, designed for busy healthcare professionals, that help them to cater to
the very special needs of premature infants and their families.
4) Implementing
support groups and information services for parents of preemies that are catered
to their special support and informational needs.
5) Advocating for the rights
of premature infants and children to receive the best possible care and to participate
in special programs designed for their needs during their early and advanced developmental
stages.
6) Making essentials such as clothing, diapers, pacifiers and nipples
that are specially designed for premature infants readily accessible in stores and
inexpensively priced.
7) Raising funds to support research studies that help
prevent premature births and to further technological developments that assist in
saving premature infants.
8) Raising funds for life-flight transportation
from hospital to hospital across the country for critical care infants.
9)
Providing assistance with meals, lodging and expenses for parents of preemies who
travel to hospitals across the country to be with their children during surgeries
and treatments.
10) Promoting strong communication between doctors, nurses
and parents and encouraging parental involvement in the care and development of their
premature infants while in the NICU.
My name is Elaine Sayers. In January and
February of 1994, I gave birth to premature twin girls named Alexis and Kaitlyn.
Alexis was born on January 29th and Kaitlyn was born ten days later on February 8th.
Alexis was one pound, six ounces and Kaitlyn weighed one pound, ten ounces at birth.
They were what is known as "micropreemies." The story behind their births
is very compelling and we'd like to share it with you.
In October 1993, my
husband, Tim, and I received the very happy news that were were pregnant for a second
time. In March of that year, we gave birth to our son, Collin. He was a very healthy
seven pound baby boy. He was a full-term baby with no problems during pregnancy.
As with Collin, we expected our second pregnancy to be very successful. We had no
idea that what was about to happen to us would change our lives forever.
As
with my first pregnancy, as soon as I found out that I was pregnant, I made the usual
appointments to begin my prenatal care.. My first appointment went well and everything
seemed normal. As my second appointment neared, I was entering my third month of
pregnancy and I started having problems. One week before my appointment, I woke up
in the morning feeling very ill. I immediately called my doctor and rushed to the
emergency room. My doctor examined me and conducted an ultrasound. He informed us
that I was carrying twins and that one of my twins was dangerously low in my uterus.
I underwent an amniocentesis which showed that my twins were "normal" and
doing well, but that there was not much amniotic fluid around them. My doctor ordered
me to stay on strict bed-rest for the duration of my pregnancy.. My life came to
a complete halt. I could no longer get down on the floor and play with Collin or
pick him up and hold him. It was a very difficult time.
For a month, the bed
rest seemed to work. My spirits were lifting and I thought things were going to be
alright until one day when my hopes were shattered. For no apparent reason, I began
bleeding again. Back to the hospital I went, thinking that I was losing my babies.
I
was examined once again and another ultrasound was done. My doctor found that Alexis
had moved into the birth canal and she was close to being born. It was too early
for her to come and we needed to find a way to stop her. I was admitted into the
hospital for observation and many doctors were consulted. My only option was to undergo
a procedure called a "cerclage." This meant that my cervix would be sewn
up so that Alexis could not come out. Although it was not a sure thing that she would
not tear the stitches and be born anyway, it was worth a try.
That evening, in
my twenty-fourth week of pregnancy, at 10:30 p.m., I went into labor. I called the
nurse and told her about my pains, but no contractions showed up on the fetal monitor,
so she assured me that I was not in labor. Well, I was definitely in labor because
at 2:45 a.m. the following morning I was dilated to six and Alexis was coming strong.
At this point, I was dilated too far for the doctors to try to stop my labor. At
3:16 on the morning of January 29, 1994, Alexis came into the world. She weighed
one pound, six ounces, and had pneumonia. She was immediately removed from the delivery
room by a team of NICU doctors and nurses to be examined. I remained in the delivery
room with my husband, terrified and extremely concerned about Alexis, but we had
another problem. We had another baby that was going to be born.
Kaitlyn, our second
twin, didn't come immediately after Alexis. As a matter of fact, she wasn't born
for ten more days. My labor just stopped. The doctors assured us that Kaitlyn would
come within the subsequent twelve hours after the birth of Alexis, so we just had
to wait it out. When my labor didn't resume after twelve hours, the doctors became
very concerned. Alexis' placenta did not deliver after her birth. The umbilical cord
remained also. The doctors didn't know what to do. They didn'tt want to force the
delivery of the placenta because they did not want to provoke Kaitlyn to come too
early, so they left the cord to hang for ten days.
During my ten day wait,
I still had to lay flat on my back with my legs elevated. It was a terrible time.
I was wheeled to the NICU each day to see Alexis, but was warned not to let myself
get upset or not to worry too much because I still had to think of the child inside
of me. Each day brought different news. One day she was doing just fine, the next
she was not doing well and we should be concerned. I was on an emotional roller coaster.
I just wanted the whole affair to end.
Each day I underwent physical therapy
for my legs to promote circulation and I had to have a series of steroid shots to
help strengthen Kaitlyn's lungs. There were also many ultrasounds conducted to monitor
Kaitlyn's position and progress. These ultrasounds were very critical because they
showed us whether Kaitlyn was in a breech position or in the birth position. As long
as she was in breech position, we felt that we were buying time because she was not
yet ready to be born.
On February 8, 1994, I was in my hospital bed waiting
for my husband to arrive for his daily visit. As I waited, I began to feel a strange
sensation in my body. Within seconds, I felt a warm splash of liquid shoot down my
legs. In horror, I watched as blood soaked through my blanket from my hips to the
end of the bed. The two placentas had separated from my uterus and I was bleeding
profusely. I thought I was going to die.
After calling the nurse, doctors
and nurses rushed into my room. They began rushing around trying to get an ultrasound
machine to see what was happening. After I underwent the fastest ultrasound in history,
the doctor informed me that Kaitlyn had not moved from the breech position and that
an emergency c-section would be necessary for Kaitlyn's survival. I went numb. I
started yelling for my husband, but was told that there was not enough time to contact
him. I was rushed to the delivery room, terrified that my baby and I were going to
die.
Six hours later I awoke in the recovery room to my husband standing over
me crying. He said that Kaitlyn was just fine. She weighed one pound, ten ounces,
and was doing well. We both survived and I was on top of the world. I was released
from the hospital four days later only to begin my long stretch of staying at the
hospital's NICU with my girls.
Kaitlyn was placed in an incubator next to
Alexis. They looked like two tiny pink frogs in plastic boxes. Their eyes were still
fused shut, they had very little baby fat and they were engulfed in tubes, wires
and patches. Due to the tape on their faces which held the ventilator tube in place,
we couldn't even see what they looked like.
For weeks, Tim and I and the rest
of our family took turns staying at the hospital with the girls. They were on ventilators
and oxygen, but they were eating well and making progress. We thought that our hard
times were over. All we wanted now was for our twins to grow and be healthy so that
we could take them home.
On February 24th, we were getting ready to go to
the hospital for our daily visit when the call came in that every parent fears. Alexis
was growing tired and failing the ventilator. Her doctor was manually bagging oxygen
into her lungs. We rushed to the hospital and were greeted by Alexis' very calm doctor
who told us that it was usual for a baby to stop responding to a ventilator periodically
and that we should not panic. I don't know if it was a maternal instinct or what,
but I didn't believe her. I began crying hysterically and yelling at her to do something.
I knew my baby was dying.
After three hours of bagging oxygen into my baby's
lungs, the doctor decided that Alexis needed to be transferred to a Children's Hospital
where she could be placed on a special jet ventilator. We consented to the transfer
and the ambulance was called. Within three hours, Alexis was placed in the NICU at
Children's Hospital on a jet ventilator. After she was settled in, her new doctors
wanted to meet with us to discuss her treatment. We were told that Alexis was in
very bad condition and that it would take a miracle to save her. That evening our
families came to the hospital to support us and to spend time with Alexis. Tim and
I were told to go and get some rest and that we would be called if her condition
worsened.
At 5:00 a.m. on February 25th, the hospital called us to come in.
Alexis had taken a turn for the worse. We rushed back to the hospital and stayed
by her side. Our families joined us as we sang to her and told her how much we loved
her. She fought and fought all day long until she could fight no longer. At 6:45
p.m. her doctor told us that we could take her off of the life support if we were
ready because there was nothing more they could do.
At 7:10 p.m., Alexis
was removed from the life support machine and placed in my arms where she died.
Today,
Kaitlyn is four years old, but she is smaller than her three year old brother, weighing
only twenty-five pounds. She has had corrective eye surgery to halt the progression
of retinopathy of prematurity (blindness as a result of a detached retina) and tubes
placed in her ears. She is receiving physical and speech therapies and exhibits some
difficult behavior problems. She is a beautiful little girl with a lot of love to
give, but her problems did not end when she left the hospital. She and Alexis are
our inspiration. Alexis is our angel and Kaitlyn is her legacy. They are the reasons
why The Alexis Foundation exists today.
The Alexis Collection for premature infants was lovingly designed and developed
by Amy Roberts for The Alexis Foundation, so that parents of premature infants can
dress their tiny angels in comfortable, quality clothing during their NICU stay and
after discharge. Our outfits are sized to fit infants ranging from three to five
pounds in weight and fourteen to eighteen inches in length. In addition to the smaller
size of our clothing, we have taken special consideration to allow easy access to
baby and extra room for tubes, wires and other necessary medical equipment attached
to baby. Our outfits are made from soft, decorative materials and carefully sewn
to provide ultimate comfort against baby's delicate skin.
The Alexis Collection
offers the following clothing garments for baby:
* Undershirts
* Hats
* Rompers
* Sleepers
* Gowns
Premature Birth Awareness will be the focus of a special week-long campaign launched
in Birmingham, Michigan in September, 2001. The Alexis Foundation is hoping to heighten
awareness about the frequency of premature/low birthweight births in the U.S., as
well as the problems faced by preemies and their families.
Event planning
will include banners, posters, fundraising, exhibits, a media event, resource packets
for families and a strong focus on RSV awareness.
All Downtown Birmingham
merchants are encouraged to support this event to help reach out to hundreds in need.
The Alexis Foundation for Premature Infants and Children was founded in 1994 by
parents of premature twin girls. Our foundation was established to help fill the
void of information and resources available to parents and caregivers of premature
infants and children. TAF is a 501(c)(3) non-profit foundation, incorporated in the
State of Michigan. We are a volunteer foundation that accepts public and private
donations in order to fulfill our mission.
Since 1994, The Alexis Foundation
has offered support to hundreds of parents of premature infants and children through
telephone support, informal support groups and the distribution of informational
and resourceful literature. Through the hard work of our dedicated volunteer staff,
we have compiled hundreds of resources for parents and caregivers, ranging from organizations
catering to specific needs to books and video tapes. Please refer to our resource
page for an extensive list of resources available - credited to the wonderful work
of Mary Searcy, mother of a preemie and the Executive Vice President of The Alexis
Foundation.
In 1996, The Alexis Foundation began promoting public and political
awareness of the growing problem of premature births by writing letters, making telephone
contacts and appearing on news programs and cable network shows. We are currently
planning a national Prematurity Awareness Campaign which is scheduled to launch by
the year 2000.
In 1997, our foundation created a line of specially designed
clothing for premature infants to wear while in the neonatal unit and after discharge.
Our clothing is comfortable and specially designed to allow extra room for tubes,
leads and other necessary equipment that needs to be attached to baby. Made out of
love and designed especially for infants 3 - 5 pounds, our clothing line helps parents
participate in the bonding process with their baby while in the hospital. The Alexis
Collection was designed and is run by the very talented Amy Roberts who has volunteered
her precious time to design and sew the outfits in order to keep the cost of the
outfits very reasonable for parents.
In 1998, The Alexis Foundation assisted
in transporting two premature infants from the State of Colorado to the State of
Michigan to receive specialized care at a Michigan hospital. Our foundation played
an important role in obtaining air fare, ground transportation, lodging and meals
for a family who needed financial assistance. Through the generosity of individuals
and corporations, two premature infants were able to receive treatments for the prevention
of retinopathy of prematurity (blindness due to the detaching of the retina) which
they would not have been able to receive without assistance.
Also in 1998,
our foundation sponsored our first annual conference entitled, "Empowering Parents
of Premature Infants: A Conference for Parents and Professionals" in conjunction
with the internet support group Preemie-l. Held at the Cobo Conference Center in
Detroit, Michigan, our first annual conference was a phenomonal success, offering
information and resources to parents from as far away as Australia. Evaluating the
success of our first conference has only encouraged our belief that there is an enormous
need for support for parents and families of premature infants and children and we
vow to work harder each year to provide a more beneficial and educational conference
for parents and professionals.
If you would like more information about The Alexis Foundation for Premature Infants and Children, please call or write to: