Baby Aubrielle – Raising Awareness, Bringing Hope to Babies Born with OEIS Complex

Care Team and Community Continues to Rally for Aubrielle and Her Family
By: Baby Aubrielle
 
APPLE VALLEY, Minn. - Nov. 20, 2015 - PRLog -- Baby Aubrielle mobilized many highly skilled clinical professionals long before she made her début on May 16, 2015. It was at her mommy’s 20 week ultrasound that it became apparent there was something special about this little one.

“Our lives as we knew it were about to be turned in a completely different direction. We were told they were seeing abnormalities in our baby and they needed to refer us to a specialist right away. Our hearts sunk and we couldn't believe what we were hearing. After waiting 24 hours, what seemed to feel like weeks, we were seen by a doctor at the Maternal-Fetal Medicine Center at the University of Minnesota Medical Center,” said Kelly Howley, Aubrielle’s mother.  “We had no idea the news was going to get much more difficult. After level 4 ultrasounds and a Fetal MRI, the doctors suspect our baby to have OEIS Complex.  She was developing with her intestines, liver, partial stomach and bladder all outside her abdominal wall, along with other complexities involving her spine. We have known from the first day that we will not give up on her and will continue to fight for her survival.”

Dustin and Kelly Howley, along with their three year old daughter, Lilia, have been on quite a journey, considering Aubrielle will celebrate her 6-month birthday in the NICU with hundreds, maybe even thousands of people cheering her on, including the members of Heritage Lutheran Church in Apple Valley, Minnesota.  “When we realized it was going to be Aubrielle’s 6-month birthday near the time as our 40th annual church bazaar, we immediately knew we had to have a party for this special baby and give others a chance to contribute to her Go-Fund-Me campaign” says Sarah Salava, co-chair of the Ladies TLC group.

This year will be especially meaningful in that the ladies of the congregation have committed the proceeds from the event to directly benefit Aubrielle and her family and are also working to raising awareness of rare disorders in children.  Pastor KJ Anderson talks about how, “Before Dustin and Kelly shared their news with us about Aubrielle’s condition, I had never heard of OEIS.  It is amazing what can be done to save the lives of such little ones right here at the University of Minnesota Masonic Children’s Hospital. The difficulty and intricacy of the surgery is truly overwhelming and the knowledge and skill of the surgeons is absolutely stunning.”

OEIS [omphalocele-exstrophy-imperforate anus-spinal defects

The OEIS complex comprises a combination of defects including omphalocele, exstrophy of the cloaca, imperforate anus, and spinal defects. It may represent the most severe manifestation of a spectrum of birth defects, the exstrophy-epispadias sequence.

The OEIS complex affects 1 in 200,000 to 400,000 pregnancies and is of unknown cause.

Source: http://www.ncbi.nlm.nih.gov/ accessed via website 11/19/15

WHAT:  40th Annual Holiday Bazaar Benefitting Aubrielle

WHEN:  Saturday, November 21, 2015 (10AM – 2PM)

WHERE:  Heritage Lutheran Church

13401 Johnny Cake

Ridge Road, Apple Valley, MN

AUBRIELLE’S GO-FUND-ME PAGE: gofundme.com/Aubriellesstory (https://www.gofundme.com/Aubriellesstory)

For interviews with clinical team members or additional medical content, please contact:

David Martinson

Media & PR Coordinator

University of Minnesota Health

Office: 612-624-7403

Mobile: 763-218-7721

For more information on OEIS Complex, visit ncbi.nlm.nih.gov-OEISComplex (http://www.ncbi.nlm.nih.gov/pubmed/11251992) or orpha.net-OEISComplex (http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=12489&Disease_Disease_Search_diseaseType=ORPHA&Disease_Disease_Search_diseaseGroup=93929&Ziekte(n)/ziektegroep=OEIS-complex&title=OEIS-complex&search=Disease_Search_Simple)

For more information on Aubrielle, visit caringbridge.org/visit/aubriellehowley (http://www.caringbridge.org/visit/aubriellehowley)

Contact
Susan Doherty
***@yahoo.com
End
Source:Baby Aubrielle
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Tags:OEIS Complex, Holiday Bazaar Benefit, Baby Aubrielle Benefit
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Location:Apple Valley - Minnesota - United States
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