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Patient Stories

Patient Stories

Glenn Family Finds Hope Far From Home

During a sonogram at 15 weeks, Jeanie and Shaun Glenn of Seward, Alaska, found out their baby’s heart was off center. Additional tests eventually revealed congenital diaphragmatic hernia (CDH) with the liver, spleen, stomach and a portion of intestines all squeezed above the diaphragm into the chest cavity.

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Groundbreaking Procedure for Severe CDH

When Jenny and Tawa Torry lost their first child to birth defects caused by congenital diaphragmatic hernia (CDH), they never dreamed they’d have to face the same heartbreaking possibility again. 

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One Team, One Miracle, One Daughter

Like so many expecting parents, Amy and Joe Krese went into their 20-week ultrasound with a mix of excitement and apprehension. They were overjoyed to find they were having a girl but also learned their daughter had a bilateral CDH. 

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14 Years Later, Miracle Baby is Just a Normal Teen

To look at Allen Brothers today, you’d never know he had a rough start in life. Today, he’s a healthy 14-year-old, full of all the sass and attitude that comes with being a teenager, says his mother Christie.
 

Lifesaving Surgical Care for Patient with HLHS

Aiden Rodgers is a fun-loving and mischievous 2-year-old who has no idea how serious his early days were.
 

Extraordinary Outcome for Devastating LUTO Case

Before Luke Vela was even born, his big brother nicknamed him Tuff because of the challenges he’d already overcome.

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Canezaro Family first to undergo successful two-port fetoscopic spina bifida repair in U.S.

When Althea Canezaro found out she was pregnant, she was thrilled to give her son, Blaine, a sibling. But, her 22-week ultrasound revealed something she didn’t expect - spina bifida. 

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Less Invasive Approach to Fetal Spina Bifida Repair

Julia Wallace vividly remembers the moment a routine ultrasound revealed her unborn daughter had myelomeningocele, a type of spina bifida.

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The Future of Healing for Neural Tube Defects

Like most first-time parents, Johnna and Adam Kerres of Rock Island, Illinois, were excited to mark every milestone of their pregnancy. Until, that is, an ultrasound at 18 weeks revealed their baby boy Everett had spina bifida.

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Fetal Surgery Removes Grapefruit-Sized Sacrococcygeal Teratoma

Nine years ago, at their 20-week ultrasound check, Keri and Chad McCartney were thrilled to learn their fifth and final child would be a girl. But that excitement quickly turned to fear.

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Burroughs Family evens the odds with TTTS treatment

When Julie Burroughs went in for an ultrasound of her twins at 16 weeks, she was shocked to learn that they were not growing properly due to twin-twin transfusion syndrome (TTTS).

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In the News


After surgery in the womb, a baby kicks up hope (The New York Times - 01/15/18)
For a small person who had surgery before he was even born, and who’d just spent an hour and a half squeezing through a tight space that clamped down on his head every few minutes, Baby Boy Royer was showing a feisty spirit.


To mend a birth defect, surgeons operate on the patient within the patient (The New York Times - 10/23/17)
The patient, still inside his mother’s womb, came into focus on flat screens in a darkened operating room. Fingers, toes, the soles of his feet — all exquisite, all perfectly formed.


Our spina bifida and fetal surgery story (Pavilion for Women's Blog - 7/12/17)
It has been a very long road for my husband, Tony, and I to have children. After five years of unexplained infertility that included many tests, medications, fertility treatments, multiple rounds of IVF and, on top of that, two failed adoptions, we found out I was pregnant. 


The baby who was ‘born’ twice (Washington Post - 10/26/16)
Margaret Boemer first sensed something was wrong when her ultrasound technician stayed unusually quiet during a routine 16-week prenatal checkup.


Oluyinka Olutoye's rare medical feat (The Sun - 11/10/16)
It is cheering that a Nigerian pediatric surgeon, Professor Oluyinka Olutoye led a team of surgeons that carried out a surgery that has been generally regarded as a rare medical feat recently in the United States.  


Evaluation of the effects of laser tissue welding for spina bifida repair (Science Daily - 1/23/17)   
This preliminary study hoped to determine the effects of laser tissue welding on underlying skin and spinal cord tissue. The researchers were interested to see if applying laser energy to coagulate a special albumin compound would damage the underlying skin and/or spinal cord tissue. 


Scars unite new mom, son (CNN - 3/8/17)
Mothers and children carry deep bonds, some more obvious than others. Johnna Kerres and her son, Everett, now 5 months old, show theirs in the form of scars.


Specialized procedure helps save twins before birth (ABC 13 KTRK - 3/29/17)
Kristina Kline's twin sons were born a few weeks ago. While they have some time before they're able to go home, their journey getting here was a challenging one.