This is a story about love. Not a romantic tale from a novel but a real
story of four people who weathered the worst things life can throw at them and
who I hope can show the rest of us that every day is a gift.
Reggie and Sontina Barnes were
happily married and living with their toddler son, Josiah, when they received
the joyous news that they were expecting.
In the summer of 2009, the family was celebrating not only the news that
the family was growing but also the fact that Sontina had been accepted to the Thomas M. Cooley Law School in Michigan Midwest for
her to pursue her dream of becoming an attorney.
At Sontina’s routine sixteen-week
ultrasound, a defect was found in their baby girl’s heart. Further testing showed that this defect was a
result of something called DiGeorge syndrome (DGS) which is
caused by a partially deleted 22nd chromosome in her DNA (22q).
Because of the potential for
considerable complications and health risks, doctors gave the couple the option
of terminating the pregnancy. With not a word
spoken between them, Reggie immediately said, ‘This is our daughter and we
would like to meet her.’ Even
though the doctors said that the heart defect might be more serious than the
testing revealed the desire to see their baby girl far exceeded their
concerns. So they decided to follow
through with the birth.
That winter in Michigan Michigan Asheboro ,
NC
Their daughter, Selah Janan
Barnes, was born at Duke
University Hospital
Immediately upon
her birth, Selah was whisked away for observation. Aside from a few
pictures, they did not really get to spend any time with her. Because doctors were unsure how DiGeorge had
impacted Selah’s immune system, they had to isolate her to protect her from
possible infection. In order to even see her, Reggie and Sontina
had to don gowns, masks, gloves, and bags over their shoes. They were unable to hold and cuddle with her
like most parents are able to with their newborns.
Less than a week after her birth,
Selah underwent her first open heart surgery.
The same day, doctors discovered that her immune system was not
compromised. This was the first time
they were able to actually touch and kiss Selah, not knowing whether they would
see her again.
Fortunately, the surgery was
successful. They knew that Selah would
need additional surgeries to completely fix her heart defect, but they were
thankful the first one went so well. In
recovery, Sontina recalls how hard it was to see Selah hooked up to all of the
tubes and monitors, unable to just hold her and let her know that everything
was going to be okay. Reggie continued
to drive back and forth from their home in Asheboro
to Durham but Sontina was blessed to have a room
at the Ronald McDonald House in Durham
After a few weeks and several days
of training, Sontina and Reggie were finally able to take Selah home to meet
the rest of the family. They continued
to keep family and friends updated on how Selah was doing through blog posts
and Facebook. People from all over the
world prayed, encouraged and cheered as they enjoyed the pictures and learned
the latest about Selah’s growth and progress.
In the midst of continued medical
challenges, surgical procedures and minor setbacks, they celebrated Selah’s
milestones that some parents often take for granted like her first noise or
using her hands for the first time while she was eating. They also enjoyed big family events like a
trip to the zoo, her dedication at church and even a huge 5-month birthday
party.
Reggie and Sontina were also facing
challenges outside the hospital. Reggie
was offered a job at Eastern
Michigan University Michigan
with Josiah and begin the job while Sontina stayed with Selah in North Carolina
While Reggie
traveled between North Carolina and Michigan for Selah’s surgery, Sontina
was staying again at the Ronald McDonald House in Durham , NC
The second open heart surgery was
scheduled and seemed to be a success.
However each time that Selah’s team attempted to remove her from the
ventilator she would go into respiratory arrest.
During one of these attempts to
remove the ventilator, instead of breathing on her own Selah went into cardiac
arrest, her heart stopped beating and she lay lifeless while Sontina stood next
to her.
‘Instead of breathing Selah went into cardiac arrest and
died. She stopped breathing and her heart stopped beating. I walked
out of her room not knowing if I would ever see her alive again.’
Thankfully, the doctors were able to revive Selah and bring
her back.
Sontina posted to her friends and family afterwards, ‘When I asked God to use my life for His purpose I
never knew it would entail watching my beautiful baby girl's heart stop
beating. As she lay lifeless in my hand I told God this is more than I can bear.
And just when I thought I could bear no more, I began to understand how Mary
must have felt when Jesus was on the cross.
Selah was lying lifeless because of no fault of her own. After that
moment the peace, God begin to minister to me that people will give their life
to God because of the testimony of her life. In the moment that her heart
stopped, my heart began to be transformed. From this day forward I will never
again be the same.’
Two months after the surgery, it
was determined that the phrenic nerve (which controls movement of the
diaphragm) was nicked during surgery and that was causing the respiratory
arrest. Selah’s team was then able to
take the necessary steps to get her off the ventilator but it did result in a
tracheostomy and a feeding tube being inserted.
Despite these setbacks, Reggie and
Sontina could see that Selah was improving.
She was doing so well that the additional surgery was postponed and date
was scheduled for Selah and Sontina to return home to Michigan
In early 2011, an anonymous
donation allowed for air transport to be paid in full. Selah and Sontina returned to Michigan
Selah continued to beat the
odds. Her team was amazed with her
progress.
Shortly after her first birthday,
Selah pulled out her feeding tube which prompted a trip to the Emergency
Room. Before they returned home, her
ventilator failed and she had to be revived at home. These two events led to the discovery that
both of her legs were broken as well.
Sontina and Reggie both immediately
felt the crush of another blow to their beautiful daughter. She was making so much progress. Why something else now?
However, Selah’s
broken legs became a blessing in disguise. She was found to have calcium and vitamin D deficiency and the broken bones were
merely the result of the weight that she was putting on them as she was
learning to stand during her physical therapy.
Doctors placed her in casts for six weeks to allow her to heal and get
stronger.
From them on, Selah continued to
make amazing strides in her recovery.
She was weaning from her ventilator, spending most of the day free of
machines. She was sitting up on her own
and typically worked on her strengthening exercises while watching her dad and
big brother dance. Selah was learning
sign language and was getting strong enough to stand alone. She loved to read books and watch cartoons
with her brother. She proudly even loved
to watch football with everyone else on the weekends.
As Selah grew
stronger, so did her family. Reggie continued to succeed in his new position, Sontina was
readmitted to Law
School
Life was becoming normal again full of family outings,
birthday parties and holiday celebrations.
On Valentine’s Day, Sontina and Reggie were able to get some
much needed alone time while Selah’s nurses watched Josiah too.
The next morning at 5:00 am, they
were awakened by a barrage of alarms, something they had not heard in a long
time. Selah sat straight up in the bed
in extreme pain and was having a lot of trouble breathing. First, Sontina rushed downstairs to help the
nurse. When she could not help her, she
called for Reggie to call 911. The EMS technicians did not have the necessary equipment to
help Selah, so they packed up her equipment, put her in the ambulance and
rushed to the hospital.
When they got to the ER, although
looking better, Selah was still obviously in distress. After several hours waiting, doctors could
not figure out what happened. They did
determine that Selah needed to have her feeding tube replaced again, a
procedure they would perform the following morning.
On February 16, 2012, Selah’s feeding tube was replaced and
while under sedation also underwent a procedure to strengthen the muscles
around her eyes. The surgery was
successful and afterward she was resting comfortably, waving and smiling at her
family. She was given a clean bill of
health and was expected to go home the following day.
Later that night, Sontina began to
notice Selah exhibiting unusual behavior, wincing in pain, clenching her teeth
and stiffening like a board. These
episodes happened a few more times, but Sontina would soothe her and the hospital
personnel reassured her that Selah was just having an adverse reaction to the
pain from surgery.
The next morning, instead of being able to come home as
scheduled, it was determined that Selah had been having repeated seizures over
night. Antibiotics were started and an
MRI was scheduled to look for a cause. The
scan revealed swelling but the doctor’s were unable to find a cause. Reggie left the room for a couple
hours, expecting Selah to be awake when he returned. Instead, when he returned, the brain monitor
showed little brain activity and a host of doctors were in the room. The seizures continued and Selah fell into a coma while
Reggie held her hand.
Doctors and nurses were at a loss. They didn’t know what had caused the
coma. Reggie and Sontina were again in a
Ronald McDonald House while their baby girl continued to fight. Reggie’s faith never wavered, ‘We have no
fear, just anticipation for what God is about to do to show the world His
limitless healing power. Her attending (physician) said that he hasn't seen a
case like hers in 25 years in medicine, I looked at him and the other doctors
and said, Great! It looks like the perfect time for a miracle!’
Messages and prayers were flooding the Facebook pages,
emails, and cell phones of both Reggie and Sontina; people from all across the
world spent days praying and hoping for a miracle. In the midst of the medical teams,
machines and tests, Sontina and Reggie took turns at Selah’s side. Reggie remembers holding Selah while watching
“Tangled”, one of Selah’s favorite movies.
On February 22, 2012, after having been pronounced brain
dead, Reggie and Sontina were faced with the heartbreaking decision no parent
should ever have to make and after much prayer; they decided to remove Selah
from life support.
A few days earlier, in the wake of
the news that her brain had ceased responding, someone had asked if they might
be willing to donate Selah's healthy organs to another baby in need if for some
reason she did not pull through. They
immediately said it was something they would consider. Now that that time had come, they agreed to
move forward with the donation. Selah
remained connected to the ventilator until doctors could determine her
eligibility for transplantation and find a donor match. At the time, because of Selah’s size and the
fact that very few African-American families choose to donate organs, she was a
perfect candidate. In a matter of hours
following the tests, a match was found in the same hospital.
“As soon as they said Gift of Life, for me, it was
immediate,” Sontina said. “There wasn’t a doubt in my mind that that was
something I wanted to give to another child.”
In a Facebook post, thanking friends and family for their
prayers, the day after his daughter’s death, Reggie said, ‘although our hearts
are broken, that pain is far exceeded by our continued and ever-increasing love
for and faith in God! He has not only strengthened us throughout the many transitions we have endured over the past three years, but
has also given us even more confidence in His omniscience, omnipotence and
unconditional love. Although we do not yet understand why He has allowed this
to happen, we trust His wisdom more than ever. Everything happens for a reason.’
It is now a little over a year since Selah’s passing
and Reggie, Sontina and Josiah have continued to live and to grow. What could have torn some families apart
instead made this family stronger and more steadfast in their faith than ever
before in part by the ‘cost
in this life to be called according to God's purpose.’
Above everything else, Selah’s
memory and example of strength in the midst of hardship keep Reggie and Sontina
going. Reggie continues to strive for
social change in his position at Eastern
Michigan University Washington
D.C.
As a mother, I can not even fathom the pain that these
incredibly strong people endured over the course of Selah’s too short
life. I do know that I have learned
lessons from them about unconditional love, grace and strength more than either
of them could ever know. Reggie’s strength and ever-visible adoration for his
wife, son and daughter is something to aspire to and Josiah’s smile when
looking at his little sister’s photo is one everyone should have. Sontina’s
words regarding her daughter are more powerful than any I’ve ever read in a
great work of writing. It is my hope that everyone can learn at least
one thing from the most amazing love story I’ve ever known.
For More Information about the Ronald McDonald House, visit http://www.rmhc.com and for more information on
becoming an organ donor, please visit http://donatelife.net
Stephanie Bertorelli is the co-owner
of S2 Media Concepts, a Media Consultant, Publicist, and author living in Charlotte , NC
