<h1 class='title'>Neonatal Abstinence Syndrome: Journey Beyond the NICU</h1>

Neonatal Abstinence Syndrome: Journey Beyond the NICU

Special note from Whitney Moore, adoptive parent of a baby born with Neonatal Abstinence Syndrome

NAS baby photoIn early 2012, my husband and I decided that we were ready to start on the exciting journey of adopting our first child. We knew that whatever child God had in mind for us would be perfect and so loved! In June of 2012, we received a call that a birth mother wanted to meet us. We were so excited, and after meeting, we knew that this was the one! Thankfully, both birth parents agreed that we would make wonderful parents, so the process began!

The birth mother wasn’t sure how far along she was, so I scheduled a time to take her to Hope Resource Center in Knoxville for her first ultrasound. It was there that we found out that she was approximately 7 months pregnant. From that point on, I took her to almost every appointment throughout the remainder of the pregnancy. After every ultrasound, my husband and I would look at the pictures and imagine what our baby girl would look like, how she would act and what types of things she would like.

We purchased her going home outfit, and made plans with our family members to have a welcome home gathering for her. We were ready for a healthy baby girl, and by week 32 into the pregnancy, we anxiously awaited her arrival! However, things took a dramatic turn from what we had imagined. We found out around week 33 that the birth mother was using drugs, heavily. Amphetamines, opiates, barbiturates, and marijuana were the most frequent drugs of choice. Our hearts were broken, because we couldn’t protect our unborn child from these horrible things. We felt betrayed by the birth mother, who had assured us that she did not use drugs. Believe it or not, she didn’t look like someone that was abusing drugs; after all there isn’t a certain class or group of people that drugs affect. They have no boundaries. The OB/GYN never mentioned her failing drug tests, and had the birth mother not asked for a prescription for hydrocodone, we probably wouldn’t have known about the drug use until the actual birth. Knowing the truth wouldn’t have changed our minds, but it would’ve helped us become better prepared.

While we had tried to got ready for what the days following the birth would bring, we still didn’t know what to expect. Nothing can prepare you for this. Even though the nurses and doctors tried to educate us, they could not begin to portray the horrible sight of withdrawal in a newborn baby.  I cannot describe the helplessness, fear and anger that we felt when we saw the pain and suffering as she cried uncontrollably, watched her tremor with force, the agitation from sound and light, not being able to rub her skin because it hurt her, or the most unbearable site as she had seizures all within the first day of life.

You could hear her pain coming out through her cry. You could see the pain through her eyes. While in so much pain, she would give us a certain look, almost as if she knew that we were up for the challenge and she was safe in our arms. Within 2 days of birth, she was transferred to the NICU at East Tennessee Children’s Hospital, where she continued to withdraw.  Watching a tiny baby be given morphine to reduce their pain is terrible, but she had to have it. She was discharged into home health care after a month or so in the NICU, but the journey was far from over.

Most people have heard about the drug epidemic in East TN, and most have heard about the growing rate of babies that are born with Neonatal Abstinence Syndrome (NAS), the result of a newborn that was exposed to drugs while in the mother’s womb. However, it is unlikely that you have heard about the journey and struggles that these babies face once they are discharged from the NICU.

Over the past year, we have lost count of how many miles we have driven to specialist appointments, physical and occupational therapy, how many nights she has spent either at ETCH or Monroe Carell, Jr. Children’s Hospital at Vanderbilt for complications related to the drug use from the prenatal exposure, hours she cried from the pain as her body continued to withdraw or from the pain of gastrointestinal and neurological problems, or how many rounds of medicine she has taken to help her function from day to day.

While she did have developmental delays during the first 6-8 months of life, she seems to be caught up for the time being. We have been told to expect more delays around ages 2 and 3, but we are hoping through occupational therapy and working daily on age appropriate skills that these delays will be minimal. At 17 months old, she has severe sensory problems and goes to occupational therapy to help with those. She sees a GI doctor on a monthly basis to help keep her medicine and body regulated enough to remain as pain free as possible.

At 17-months old, she still requires a prescription formula and while she can have some table food, it is minimal. She loves to be around people, but unfortunately large crowds or lots of activity results in hours of crying or agitation by the end of the day, because it’s too much for her to process. It takes her hours to go to sleep at night, because she can’t shut down even with a good routine. Once she gets to sleep, she typically only sleeps a few hours at a time, and wakes up in a panic. There are times when she has mini-spells where she gives us an empty look and screams, because she doesn’t have a clue who we are or where she is. She does come out of it after a few minutes, but the look of confusion and no recollection of what happened is heartbreaking.

While the journey has been long, tiring and hard, we have never regretted one single day of it. Do we wish that she didn’t have to go through this? Absolutely, but we are thankful that God placed us in her life to help her. These babies don’t stop suffering after they’ve been weaned off of their medicine in the NICU, many of them suffer dearly for a long time. The drug epidemic in East Tennessee doesn’t only affect adults, it’s also affecting the health and everyday lives of hundreds of innocent babies every single year.

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