Tag Archives: babies

The Best Holiday Gift

The Children’s Organ Transplant Association is an organization to which we have guided many of our donors over the last several years. Last week, they provided us with a beautiful holiday story about one of the children that donor funds helped. In the spirit of the season, I thought it appropriate to share here.

-Sara

During a season filled with lists and wishes, the holiday gift one Utah couple hopes for is one often taken for granted: a healthy family.  For this family, one wish has already been granted.  Now they wait for the ultimate gift … the gift of life.

Last November, Brian and Emily Hoopes received a precious gift in the form of a long-awaited adoption.  Their story began on Halloween 2008 when Baby Patrick was born in Michigan.  The young Salt Lake City area couple adopted Patrick when he was just one-week-old, bringing him home to Utah a month later.  From the outset of the adoption process, Brian and Emily knew Patrick was a very sick infant.  They were told the baby only had a few centimeters of small intestine and until he could get an intestinal transplant, Patrick would require constant medical attention.

“Beyond knowing he would need lots of medical care we also knew Patrick’s life had been a series of miracles up until that point. We hoped those miracles would continue and we decided to forge ahead with hope, despite an uncertain future,” said Emily.

Knowing the road ahead would be rocky given Patrick’s diagnosis of short gut syndrome, Brian and Emily joyfully initiated the adoption process and returned to Utah to their large network of family, neighbors and church friends.  Their network of acquaintances expanded rapidly to include Patrick’s medical team of gastroenterologists, surgeons, nurses, pharmacists, dieticians, developmental specialists and many more medical professionals.  This couple’s dedication and commitment to a tiny infant remained unwavering even as they discovered the harsh realities that laid ahead for each of them. 

The specialists at Primary Children’s Hospital in Salt Lake City, Utah, told Emily and Brian they would need to go to Seattle Children’s Hospital, an 840-mile trip, to further investigate the possibility of a life-saving small bowel transplant.  They made their first trip to Seattle in early 2009.  That trip was successful and Patrick was listed for a small bowel transplant. That’s when the waiting began. 

Just to maintain Patrick’s health while he waits for his transplant, the Hoopes’ pay co-pays for every doctor and therapist visit, and for every trip to the hospital emergency department in Salt Lake City.  Sometimes Patrick is in the doctor’s office more than once each week.  There are also co-pays for his medications; deductibles, and the costs of living at a hospital for a week or more at a time.  According to Emily and Brian, the Hoopes family has had to tighten their belt because Emily’s current full-time job is taking care of Patrick.

Intestinal transplants are a fairly new procedure.  With Patrick being listed for transplant at Seattle Children’s, Emily and Patrick need to travel to Seattle every three months for evaluations.  Each visit involves airfare and food and lodging for at least a couple days.  They also pay charges associated with seeing doctors outside of their insurance network.  When the transplant call does come and they need to get to Seattle quickly, Emily and Brian may need to charter a $10,000 flight to get Patrick to the hospital within the narrow time frame allowed by the surgical team.

It became very apparent, very quickly, that Brian and Emily Hoopes needed help.  Even though the Hoopes’ have health insurance coverage, they soon realized that regardless of how ‘good’ their insurance is, they are facing a huge financial burden — in addition to the stress of Patrick’s medical care they face on a daily basis.  In the midst of these difficult days, Brian and Emily heard about the Children’s Organ Transplant Association (COTA). 

“With the amazing assistance that COTA provided, we were able to pull together a group of friends and family who are working together to raise funds for transplant-related expenses, and to raise awareness of the transplant journey our family was facing,” said Emily.  Almost immediately, Emily became a regular contributor to Patrick’s website journal at www.COTAforPatrickH.com.  And, just as quickly, bloggers got online and started reading, and responding to, this mother’s riveting words of gratitude and hope.

After Patrick’s transplant, he and Emily will need to stay near the hospital in Seattle for about six months.  This family will split Brian’s income across two households in two states.  Undoubtedly, their out-of-pocket insurance costs will skyrocket and they will have co-pays for bi-weekly biopsies; for anti-rejection medications, and for IV nutrition, feeding therapy and home nursing. 

“When I consider the price of Patrick’s transplant journey, it is overwhelming.  However, COTA has given us hope, making it seem that one more miracle is possible,” said Emily.

Emily continued, “We have witnessed many little miracles since we found COTA.  Family, friends and neighbors have come together in amazing ways.  Strangers in our community have reached out to us.  Every little miracle gives us hope that a bigger miracle — a transplant — is in our future.  We’ve always considered Patrick’s life a gift.  We feel privileged to be his parents.  Some may think we gave our baby a gift by adopting him, but the reality is that he is giving us the ultimate gift by being our son.” 

The Hoopes family is getting ready for the holidays.  They are grateful for the ongoing support their COTA team continues to provide; they are grateful for their COTA website Journal readers and Guestbook visitors, and mostly, they are grateful for the selfless gift an anonymous family will soon give to Patrick … the gift of life. 

Truly the best holiday gift that can be given.

Advertisements

2 Comments

Filed under Uncategorized

The Littlest of These

Last April, after attending a business function downtown, I was stopped by a woman as I approached my car. She was tousled and a bit unkempt, though clean. Strapped to her chest was an infant.

April weather here is incredibly unpredictable and on that day there were snow fluries in the air. She looked cold and desperate as she explained her situation. she asked for a few dollars to help her find shelter and food for her and her baby that night while she waited for her name to rise to the top of an affordable housing waiting list. Her baby slept peacefully on – unaware of his circumstances.

I ached to give her more than I had – a few dollars and a clean fleece blanket from my car’s emergency kit – yet she received them as if I had given her far more. Tears misted both of our eyes. I returned home that day deeply changed.

That incident has stayed with me the last seven months, especially since I gave birth to my second child in August. As the weather begins to turn cold again, I find my thoughts frequently turning to that young woman – so desperate to provide for her baby that a few dollar bills and a blanket were received as if they were life’s grandest treasures. I have since learned that with the economic turmoil of the last year, shelters, food banks and other providers of basic necessities are in dire need of supplies for infants and young children – formula, diapers, wipes, blankets and the like. As a group, babies are among the most overlooked by those donating items to emergency shelters and clinics – and yet they are among the most vulnerable, especially during the harsh winter months.

As a result of last spring’s experience,  my husband and I have decided this holiday season to provide some much-needed necessities to the local March of Dime’s Teddy Bear Den – a community based prenatal health program for low-income pregnant women – in lieu of gifts to family members. I cannot fathom the hollow ache that must fill one’s soul when the necessities are beyond one’s grasp.  I don’t want to have to meet another mother and her baby on a snowy afternoon with nothing to eat and nowhere to go.

As I put my children down to bed tonight – in a warm home, with their bellies full – I am thinking again of the woman and the baby who are wrapped up somewhere in my purple fleece blanket. This year, my Thanksgiving holiday is dedicated to them and others like them – may this winter bring better fortunes, a warm place to sleep and enough food to not have to put your little one to bed hungry.

If you have a warm place to sleep and enough food to satiate your hunger during this season of giving, count your blessings and join me in sharing what extra you might have with the littlest of those among us.

-Sara Brueck Nichols

Leave a comment

Filed under Uncategorized