← See all family stories

Willa

We were completely unaware that Willa would be born with complications. A day or two before she was born some red flags were popping up, questions on the ultra sound, an unusual amount of amniotic fluid, but it wasn't until she was born and struggled to clear her airway that it was clear she had what we now know is called VACTERL Association.

VACTERL Association is an association of specific birth defects, with each letter referring to a specific defect. There is no known cause, and no specific genes have been identified that cause this. They do know that if you have 3 of the defects, you have the association.

Willa was born with a tracheoesophageal fistula where her trachea and esophagus were connected, esophageal atresia where her esophagus was connected to a blind pouch instead of her stomach, and she is missing her left radius bone resulting in her having no thumb, which shortens the arm and causes the wrist to turn inward.

Within an hour after birth, and a brief hold, she was taken from Lincoln to Children's for surgery. Since I had just had a C-Section I had to stay behind while my husband went up to be with her. The neonatologist and surgeon both called to tell me what was going to happen and made sure all my questions were answered. Her surgery was successful and the surgeon was able to fix the fistula and connect the esophagus to the stomach.

Unfortunately, that was just the beginning. Within hours of me being released (early) from the hospital, we got a call to come up to the hospital, they weren't sure Willa was going to make it. By the time we got there we were informed she had gone a significant amount of time with little to no oxygen and it was unknown what, if any, effect this would have on her. They essentially told us we should prepare for some potentially serious neurological problems.

Over the next few weeks in the NICU she would stabilize, then her oxygen would drop requiring she be intubated. It was ultimately determined she had bronchial-tracheal malacia, which is a softening of the airway (trachea and bronchi). It was described to me that our airway is like a straw, while hers was flimsy like a sausage casing, sans sausage. Despite the surgeon's best attempts to support the trachea with two aortapexy surgeries (attaching the aorta to the sternum to lift the trachea up) she ultimately was fitted with a tracheostomy tube and g-button.

Sixteen weeks later we left the NICU and were home one week to the hour before she was hospitalized again. Thus began our first year with Willa – in and out of the hospital due to respiratory infections and feeding problems.

Fortunately, her condition improves with growth, and by 18 months she was no longer hooked up to constant oxygen and a gastric bag to help empty her stomach. She also learned to walk. Her hospitalization became less frequent, but now she was having feeding/eating problems.

At my wit's end with how eating made her feel terrible and excessive amounts of drainage from her button, the same surgeon who saved her on day one suggested a surgery to help her stomach empty while at the same time performing a procedure to help with the reflux. Within a year of the surgery, Willa was eating regular food, after much hard work, including pureeing food in a Magic Bullet for 6 months.

Since birth Willa has endured 8 surgeries, countless other procedures, and daily medications/treatments. Willa still has her trach and while her malacia is better, it hasn't totally resolved. We're hopeful with an additional surgery and continued growth she can be free of her trach this Spring (2013). Willa is a delightful, playful, fun child who is an inspiration to all who know her.

We feel so blessed to have her in our lives. Natalie Merchant's song "Wonder" says it best when she sings:

We were completely unaware that Willa would be born with complications. A day or two before she was born some red flags were popping up, questions on the ultra sound, an unusual amount of amniotic fluid, but it wasn't until she was born and struggled to clear her airway that it was clear she had what we now know is called VACTERL Association.

VACTERL Association is an association of specific birth defects, with each letter referring to a specific defect. There is no known cause, and no specific genes have been identified that cause this. They do know that if you have 3 of the defects, you have the association.

Willa was born with a tracheoesophageal fistula where her trachea and esophagus were connected, esophageal atresia where her esophagus was connected to a blind pouch instead of her stomach, and she is missing her left radius bone resulting in her having no thumb, which shortens the arm and causes the wrist to turn inward.

Within an hour after birth, and a brief hold, she was taken from Lincoln to Children's for surgery. Since I had just had a C-Section I had to stay behind while my husband went up to be with her. The neonatologist and surgeon both called to tell me what was going to happen and made sure all my questions were answered. Her surgery was successful and the surgeon was able to fix the fistula and connect the esophagus to the stomach.

Unfortunately, that was just the beginning. Within hours of me being released (early) from the hospital, we got a call to come up to the hospital, they weren't sure Willa was going to make it. By the time we got there we were informed she had gone a significant amount of time with little to no oxygen and it was unknown what, if any, effect this would have on her. They essentially told us we should prepare for some potentially serious neurological problems.

Over the next few weeks in the NICU she would stabilize, then her oxygen would drop requiring she be intubated. It was ultimately determined she had bronchial-tracheal malacia, which is a softening of the airway (trachea and bronchi). It was described to me that our airway is like a straw, while hers was flimsy like a sausage casing, sans sausage. Despite the surgeon's best attempts to support the trachea with two aortapexy surgeries (attaching the aorta to the sternum to lift the trachea up) she ultimately was fitted with a tracheostomy tube and g-button.

Sixteen weeks later we left the NICU and were home one week to the hour before she was hospitalized again. Thus began our first year with Willa – in and out of the hospital due to respiratory infections and feeding problems.

Fortunately, her condition improves with growth, and by 18 months she was no longer hooked up to constant oxygen and a gastric bag to help empty her stomach. She also learned to walk. Her hospitalization became less frequent, but now she was having feeding/eating problems.

At my wit's end with how eating made her feel terrible and excessive amounts of drainage from her button, the same surgeon who saved her on day one suggested a surgery to help her stomach empty while at the same time performing a procedure to help with the reflux. Within a year of the surgery, Willa was eating regular food, after much hard work, including pureeing food in a Magic Bullet for 6 months.

Since birth Willa has endured 8 surgeries, countless other procedures, and daily medications/treatments. Willa still has her trach and while her malacia is better, it hasn't totally resolved. We're hopeful with an additional surgery and continued growth she can be free of her trach this Spring (2013). Willa is a delightful, playful, fun child who is an inspiration to all who know her.

We feel so blessed to have her in our lives. Natalie Merchant's song "Wonder" says it best when she sings:

Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love and patience and with faith
She'll make her way

Willa shows us every day how she is making her way.