Natalie Grace :: National Birth Defects Awareness Month

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January is National Birth Defects Awareness Month. This is Natalie’s story. 

It is a story of hope, love, and faith.

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My Story

I can remember the look on her face when the technician turned back to me and said, “I’ll be right back.” When she reentered the room I asked, “Is everything okay? What did you see?” She responded, “The doctor will explain it to you.”

I wasn’t sure what to expect from the results of the ultrasound. All kinds of things were going through my mind. Is she missing something? Is it Down Syndrome? Is she alive?! These thoughts were bringing me to tears. I couldn’t help myself. They are a mother’s worst fear.

The doctor explained the results showed a dark shadow near the baby’s bladder, but couldn’t tell if it was my baby or me. So, I was referred to a neonatal specialist. I had two sonos done, and the specialist found everything to be ok— so I left it at that.

We didn’t think much about it after that. Instead, we concentrated on my well-being and having a safe delivery.

She’s Here!

The day of June 15th came, and Natalie was born. A beautiful little baby girl! No sign of any birth defects or abnormalities. Everything was wonderful during the first few hours. We were loving and hugging her, plus getting her to latch on and take a bottle… but no success. This was a bit of a concern, so the pediatrician was called in and she took Natalie for another screening. It wasn’t long before the pediatrician came back through the door.

Now, when more than one doctor walks in, the “mommy alarms” begin sounding. A nurse walked in with another doctor behind the pediatrician. Greetings were exchanged and the news began to flow. “Natalie is in stable and in good health but…” NO!!! not the word “BUT!!!” It lingered in my head down to my soul.

“We found some tissue covering her bottom, so we are going to perform a surgery to identify the tissue.” My heart broke and the tears began to flow. Not knowing what to say, she continued, “We are not sure if it is just pure skin covering the opening—  or if there is even an opening at all.”

I was stunned into shock. All I could mutter was, “Ok, so what will happen for either finding?” The doctor explained that if the skin were just a film, it could be removed and corrected. But if there is no opening, they would have to do a colostomy. My heart sank further down into my body. Not knowing or completely understanding all the medical terms and explanations, I agreed to do everything possible for my daughter.

Surgery was scheduled for the next morning at 7:30 am. I had been awake most of the night, and I was ready when it was time for surgery (stitches and all). As we sat in the waiting room, all I could do was cry and feel helpless. My little button was in surgery and it felt like an eternity.

The doctor finally came out to us and expressed that a double barrel colostomy had to be done. Natalie had no outlet. She had an imperforated anus.

The beginning of five long years.

It was just the beginning of four more surgeries over her first few years.

During this time, we thought we were alone— but we weren’t. The surgeons, nurses, and our family were all God sent. Without them, I don’t think I could have made it through the emotional agony of seeing my baby rolled off to surgery time after time.

The next surgery was for reconstruction of the imperforated anus. Seems like a dull procedure, but in fact it wasn’t. Her issue of the imperforation was more serious than we thought. The descending colon had connected to the neck of the bladder, making surgery a little more precarious. Not knowing the outcome was unbearable.

The first year.

In September of 2010, Natalie had her second surgery. This surgery was for reconstruction of the anus and pulling down of the colon. Only three months old, so tiny and helpless.

I couldn’t let her go in the prep room. How was I supposed to protect her from the waiting room? How would she know that I was there? How would she know that it’s all for her health?

These questions went through my mind at 100 miles per hour. I was crying and holding my little button. I will never forget the sweet gesture from the surgeon. He noticed my emotions and quietly put his arm around me and assured me everything was going to be okay. He expressed his concern for her well being and that he would personally make sure that everything would be done for the best interest of Natalie.

This surgery lasted about three hours. A mother’s feelings during this time are hard to handle, especially knowing that your child is helpless and needs mommy. I felt anguish, fear, threat, disappointment, hope, faith, and love. Yes, it’s possible to feel all of this in a single moment in time. I know I did.

The next few months were tough. My husband and I worked out how to bathe her, how to handle every situation we came across with Natalie. Having a baby with a colostomy bag is not easy.

October 18th, Natalie was admitted to the hospital for an emergency vesticostomy. Her bladder wasn’t functioning in releasing the urine. Devastation hit us hard. Natalie had two bags on her tiny body. One bag was for bowel and one for the urine. No full baths for 9 weeks. During this surgery another abnormality was found. The surgeon discovered Natalie had an urogenital sinus which is, in fact, quite common— just not common in this particular case.

Finding this out made all the emotions spiral back into my mind and soul. She would have to go through another major surgery to reconstruct the vaginal tube. After all the consultations and analysis of what actually needed to be done, a surgery was set for December 28th. The turmoil of having to sit and wait was against me.

I knew I had to stay strong for my Natalie. She was my heart.

The day of surgery finally arrived and, little did we know, it was worst than what was diagnosed. Not an hour into surgery the doctor came out to us explaining that he could not do the reconstruction. The elision was too high – meaning it was a total reconstruction of the vaginal tube and vagina.

Our hearts stopped. But then we regained the hope that all was going to be fine— we were referred to a surgeon in San Antonio. From December 2010 to December 2011 we were in and out of doctor visits having tests and scans done to make sure we were on the right path for surgery. As those months passed, Natalie grew stronger as the surgery was nearing. On December 29 of 2011, Natalie had a 6-hour-long surgery.

One more surgery.

I remember going numb with emotions while we waited for any news from the nurses. Three hours into surgery, the nurse made her presence. Everything was going well and Natalie was stable. We all burst into tears just knowing she was stable and God was with her. For the next three hours, we prayed and waited patiently for Natalie to be in recovery.

This last surgery took a toll on us. We were away from home and the comfort of family. Natalie had to stay a few more days for her recovery. I don’t remember how many stitches she had to have. She had to have a mermaid wrap to keep her stable so she wouldn’t pull on tubes or catheters. Not knowing what was to come after this surgery was pure terror. Would she be able to urinate normally again? How would her body react to the reconstruction? These questions were answered within time.

Coming up for air.

All this happened within the first year and a half of Natalie’s life. Our first year was an amazing journey filled with hope, love, and faith. I wouldn’t change any part of this experience. As parents, we have learned what true, unconditional love is and what it looks like in our family. Our children are our life, and we take the necessary steps to fulfill their destiny. Knowing what we know now makes a difference in the value of our daughter’s life.

For more information on birth defects and their prevention, visit the Centers for Disease Control and Prevention.

 

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Melissa May Gama Bean
Reflecting on the many blessings I have I can say that I'm fortunate to be in God's favor. I have two beautiful daughters that have brought a change of life to our home. My husband and I have known each other since we met in the fifth grade. We call ourselves elementary sweet hearts. Our lives have brought us together in ways we never imagined. Living life together has made the journey easier and well worth the memories we share. Currently, I am a second grade teacher and I hold a bachelors in sociology and a masters in education administration. As an educator, I have become an advocate for children and teachers. Believing in others that they can achieve anything they set their minds on helps them succeed. People today need to be compassionate about what they do for a living and that's me-I am a compassionate, strong willed woman who will aim high in achieving success and helping others achieve their own goals.

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