Madison Fay Baumann
 |
I’m probably very much like all of you other responsible mothers out there. I did not drink or smoke during my pregnancy. I took my prenatal vitamins and slept as much as possible. I took my folic acid before I got pregnant, and sang to my baby before she was born. I dreamt of what our baby would look like and longed to hold my little miracle.
On January 30th of this year, we delivered a beautiful baby girl named Madison Fay Baumann at Beth Israel Hospital. As any new parents, we were ecstatic, terrified, elated, thrilled. This was until we were visited by a nurse who informed us that our daughter Maddie was turning "dusky" when she fed. Confused by the word, the nurse clarified for us, "blue". And so began the long medical nightmare with our tiny baby girl.
Maddie was transferred to the newborn intensive care unit at Beth Israel where she underwent thirteen days of extensive testing to try to determine why she was turning "dusky" when feeding. Incubators (or isolettes as they are now called) were everywhere; babies hooked up by wires to a never-ending number of monitors and machines, etc. No one could seem to figure out what was wrong with Maddie. Her oxygen level would drop so low that she would turn as bluish gray as the coldest New England winter sky. When this occurred, monitors would alarm, and nurses would run at breakneck speed to provide immediate oxygen and arouse her out of these episodes. I don’t think I could ever describe anything as terrifying.
Each day, we were told that she could not go home until she had five episode free days, which never happened. After a battery of tests, the short-term diagnosis was that it must be something maturational, i.e., Maddie simply had not yet mastered the suck/breathe/swallow instinct that a newborn should have. If it had only been that simple.
As week two was drawing to a close, one of the neonatologists ordered a test called a Barium Swallow. Simply put, they wanted to take an X-ray of my daughter as she was eating to ensure there was nothing anatomically wrong with her. The chances were extremely slim that this would turn out to be the case, but the test was set for the next day at Children’s Hospital, just across the street.
An ambulance and a team of four arrived to transport my tiny peanut to Children’s. My parents were visiting from North Carolina (anxiously anticipating the homecoming of their first grandchild), and my father escorted me to Children’s, while my mother stayed behind warming a bottle for Maddie’s return. When we arrived the chief radiologist explained that they would be looking to rule out the possibility of two kinds of internal defects, one more common and one much more rare. They began the test, which included feeding Maddie a sample solution while an X-ray screen would monitor the path her food was taking as she swallowed. The test began, and with the flick of his wrist, the radiologist turned off the screen, turned to me and simply said, "She has the rare kind".
I was stunned. All of the cliches are really true. My knees went weak and the room started spinning. The radiologist told me that immediate surgery would be required...that she would die without the operation. I could not even begin to fathom such an invasive procedure performed on my tiny baby, barely five pounds. I felt horribly alone and quite honestly, very sorry for myself. Everyone around me was saying how everything would be fine, but I didn’t feel fine.
What Maddie had was the rarest type of a congenital anomaly called tracheo-esophogeal fistula or TEF. The "rare kind" or H-type is simply that Maddie’s esophagus and trachea were attached by a miniscule connection, (fistula) that was causing food to pass from her esophagus into her trachea and lungs, as opposed to the stomach. She was choking and gagging each time she fed, similar to when something "goes down the wrong tube." No one knows what causes it, and Children’s Hospital only sees one child each year with this rare medical condition.
What followed happened so fast. My father went to get my horrified mother at the BI, and my husband rushed over immediately. We talked to a slew of doctors and nurses who told us what the six-hour operation would entail. They explained that while they were confident about her prognosis, there always was the possibility that complications could arise.
Unfortunately, complications did arise. For several weeks after her surgery, Maddie was having trouble breathing, and was hooked up to a ventilator that required her to be fed through a tube in her nose. The doctors weren’t sure why she was having trouble post-op. They first thought it was swelling, so they treated it with steroids. Then they thought it might be something called tracheal malasia, but it wasn’t that either. Finally, they took little peanut back to the operating room to do a bronchocopy, which would look at the inside of her throat. What they discovered was as a result of the surgery, Maddie suffered injury to her laryngeal nerves, which caused paralysis of her vocal cords. What began as one horrifying condition, (the TEF), lead to another. The doctors told us that they were going to wait a week or so and hope that the cord motion would come back. So we waited...but luck was not on our side.
It was at this point that the doctors said we would have to make a choice for our little Maddie. We could leave her in the NICU, hoping her cords would come back, or we could send her back to the OR, (for the third time) for a tracheotomy. Needless to say, I was horrified. How could we be expected to make a decision like that? Our choices were to leave our tiny baby hooked up to monitors and machines in a sterile, lonely environment, or we could choose to have a hole put in her neck, creating an artificial airway for her.
After extensive soul searching and many tears, we decided the best thing for our daughter was to have the tracheotomy so we could take her home. I began mentally preparing for what life would be like for her (and for my husband and I). I was told that thousands of parents take home their "trached" children and with a little effort and help from some machines, that her quality of life would be as high as any other child’s. Needless to say, I can’t tell you how heart wrenching it felt when they were wheeling her back to the OR on that Friday the 13th in March. What would she think of me? What would others think of me? What would people think of her?
Well, it’s been six weeks since Madison’s last surgery, and she has been home with us for just over four. Choosing the tracheotomy was by far the most important and best decision we have ever had to face. Maddie is now smiling, kicking, laughing and doing all of the things any other child would. We take her shopping and for walks like any other child, and explain Maddie’s ordeal to the occasional stranger who inquires when they see her. But most people don’t even notice her trach. I know my husband and I surely don’t.
You may be thinking that my family has been through so much in the first three months of my little baby’s life, and maybe even feel sorry for us. However, you should know how completely fortunate and blessed I feel to have a beautiful, happy baby at home to love and care for. She may not be exactly the way we expected her to be in our mind’s eye, but we couldn’t imagine our lives without her. This Mom feels an overwhelming sense of gratitude for what she has. Every day when I look at Maddie, I think of what a miracle I have in her. She is a fighter who struggled so hard, hospitalized for the first 53 days of her life...harder than I have ever had to struggle in my life.
Maddie’s story is for all of the families in the world whose children are not quite as medically fortunate. You already know what little miracles you have in your children and how special they are. I know you are strong, will continue to be strong, for everyone’s sake.
This story is also for the Moms (and Dads) out there who have healthy children, without ever considering the alternative. I know you already realize how blessed you are with your beautiful family. If you think of it, hug them tighter tonight. Tell them you love them.
I have so much to be thankful for as I look at my little baby. For me, not quite 30 years old, this experience has put the rest of my life in perspective.
What a miraculous journey it has been so far. We love you little Madison.
Susan Baumann
