Each day for the past nine months, Erin Hughes has been faced with the reality that her son, Rowen, has a condition known as VAcTErl Association. However, for seven out of those nine months, Erin’s son has also been receiving early intervention therapies through Rainbows United. Though Erin did not know Rainbows existed prior to her son’s diagnosis, she says working with Rainbows has been a wonderful experience for her family, and has dramatically helped Rowen’s progression after undergoing four major surgeries. Rowen has been working with Rainbows’ Speech-Language Pathologist Joanna Wiebe every two weeks since last May. Rowen has experienced great success advancing his developmental skills and therapy has been instrumental in helping him reach many first year milestones. “He has come so far and his support team is with him all the way,” says Joanna. “Rowen is bound to continue amazing strides in his future, and I am so glad to be on his team.”
As the mother of a child with special needs, Erin chose to boldly share her heart, writing about her family’s journey. She tells about everything from their son’s initial diagnosis to all the challenges and triumphs that have since followed. Her purpose behind sharing their story is a desire for another family, another parent, another child to be uplifted in knowing that there is hope. Thank you for being open and honest with your narrative, Erin! Hearing Rowen’s story will impact many people. We admire your bravery and encourage all our families to share their experiences. Read Erin’s account of Rowen’s story here:
The past seven months have been some of the most challenging, yet most rewarding months of my life. We found out in the Fall of 2014 that we were pregnant with our second, while still feeling as if we were only just beginning to adjust to life as new parents with our 7-month-old daughter! Fast forward 9 months of pregnancy and preparation, and in April of this year, we all of a sudden were a beaming family of four! It seemed surreal, but also just the way it was supposed to feel with our 14-month-old daughter, and now our newborn son.
There is nothing in the world that can even describe that feeling of holding your brand new baby, skin-to-skin, in your arms. You’ve had nine months to prepare for this child, and you have a life time ahead of you, to which you have a vision will turn out just as you have been expecting it to, ever since you played House with your best friends in grade school. All you mamas know exactly what I’m talking about, right?! That moment you hold your brand new baby could last an eternity. I wanted that moment to last that long. The pediatrician came in to do the initial exam, and said he’d be returned into my arms for many more snuggles. That’s when I learned what an eternity truly feels like. As my 10 minute old baby was being examined, my husband and I knew something was not right. It was taking the doctor far too long to “examine” what would be considered a “healthy” child. It was that very moment, that he turned to us and said in these exact words, “Your son is beautiful, and everything looks fine, except that I do not see an anal opening.” The rest, I have no idea. Beyond those words that he spoke to me, I froze, and heard nothing more. The room immediately turned into chaos with a swarm of nurses, and words being strewn about. Rowen was wrapped up tight, tucked into the little incubator, and covered with wires. I was told to say goodbye for the moment, and that I would see him again in NICU when I was able to be dismissed from the labor and delivery wing. At this moment, I then learned what it felt like to say one of the hardest goodbyes that I will ever have to say. I knew nothing more than what the pediatrician had said, I was coming off of the most exhausting 24 hours a woman can experience, and emotions were being tested 150%. My husband kissed me, and promised that he would be glued to Rowen’s side until we knew much more.
This most challenging time in my life has now been seven months ago. We have a healthy, beautiful, seven-month-old baby boy at home with us. He laughs uncontrollably at his big sister, running laps around him! I can honestly say that I am so happy with life as it is today! Would I ever have thought this on that night that Rowen was taken from my arms, and whisked to NICU? Heavens, no! I have always wanted to share our story for others to hear, but just couldn’t bring myself to do it. The first few months were just THAT hard. We are finally to a point where I can take a deep breath, smile, and tell myself that it’s all going to be ok. I want other parents who experience an “unknown” at childbirth to also know that. It will be ok. Days. Weeks. Months. They all drag on. You walk many steps within the hospital halls, and lose sleep each night, knowing your newborn baby is not home with you. You dread the surgeries. You cry in the arms of your spouse, wondering why God would ever do this to you. You fret because your child is not hitting the milestones that other babies are at a certain age. You research. And research. And research. Only to freak you out more. I know all of this, because I’ve been there. I get it. I want to share with you our story, in hopes that you might be uplifted in knowing that there is hope.
Since the night Rowen was born and whisked away from me, much more has been learned about his condition. We have experienced many days/nights within hospital walls of both NICU, and now a children’s hospital. Rowen was diagnosed with what is known as VACTERL Association. It is not genetic. It is not a syndrome. It is not a disease. It is simply a malformation of specific systems within the body during pregnancy. VACTERL stands for Vertebral, Anal, Cardiac, TracheoEsophageal, Renal, and Limbs. All of these systems develop about the same time in utero, and can have malformations. If two or more of these systems is affected, a child is considered VACTERL, capitalizing the letters of those conditions that they have. After many tests and observations in NICU, Rowen has officially been diagnosed as VAcTErl.
In fancy words, he has a partial sacrum agenesis of the spinal cord, an Imperforate Anus (IA), and tracheo-esophageal atresia (EA). In words that make more sense to you and I, he is missing a few segments of his spinal cord within the tailbone, he was born without the lower colon and an anal opening, and his esophagus was not attached to his stomach. At 12 hours of age, he underwent surgery to place a colostomy. At 48 hours old, he then had a major surgery to attach his esophagus to his stomach. We then spent one month to the day in NICU at Wesley Medical Center to recover. With a tender tummy, it took quite a while for Rowen to learn to eat, which was probably the most frustrating piece to us, throughout that eternity of a month.
Rowen was dismissed after one month in NICU to finally come home! We spent 3 months together at home, as a family of four. Life was normal. It was OUR normal. Rowen had severe reflux issues due to his EA. I’m talking…SEVERE! It wasn’t that he was just fussy. It was that he screamed! He threw up more than he was actually taking in…I’m still not sure how that was ever possible! I was doing 3-6 loads of laundry each day. We had towels laying on the floor, scattered around the entire house. Wherever we were, there was a towel close by in case he threw up. We visited the pediatrician on a weekly basis to monitor weight gain, and to try all sorts of reflux medicines. Some helped, many didn’t. We were documenting EVERYTHING: every mL of milk he ate, every diaper change, every med, every time he threw up. It was like I was back in the classroom. Everything had to be documented. We were also changing a colostomy bag, and let me tell you, those are not easy! I researched and researched ways to keep that darn thing on! By July, I was a pro! It became a competition between family members and our babysitter, to see who could get the bag to stay on longest! I think Amanda, our sitter, and I were tied at 7 days!
As long and rough as those first 4 months were, we made it through. My husband and I also had time to research more about what an Imperforate Anus (IA) was, and what our next step for that piece would be. We found Dr Levitt, at Nationwide Children’s Hospital – Colorectal & Pelvic Reconstruction Center in Columbus, Ohio. He is world renowned for treating children with colorectal malformations, and has performed many successful surgeries on babies with IA. In early August, we packed up, said goodbye to our oldest, and flew to Ohio for the next step in Rowen’s journey. We were there for 3 weeks, from pre-testing, to the surgery itself, recovery time, and for our post-op appointment. It was then that we returned home, until our next trip to Ohio. Dr Levitt had reconstructed the colorectal region, so Rowen now had an anal opening. This procedure is known as the Posterior Sagittal Anorectoplasty (better known as the PSARP). The colostomy remained, as to allow his new bottom to heal. We also were given instructions to dilate the opening over the next few months. In late October, we returned to Ohio for the final step of his IA reconstruction. Dr Levitt did what is called the Colostomy Reversal. This is the actual step to reconnect the bowels to create a fully working digestive system.
Today, we are home, with our baby boy who is officially 7-months-old! I can’t believe that seven months has gone by, yet it also feels as if it has been years since that moment I held him in my arms for the very first time! I have learned so much about myself, about parenting, about marriage, and about what Motherhood truly means to me. I can’t say that I would have it any other way, because let’s be honest, I would. I would give anything to have a child with a completely normal digestive system, but I can’t change that. I am, however, thankful for modern medicine, and the ability that Dr Levitt has provided my child to digest as normal as possible, for what Rowen was given.
A quote that I remember from my teaching years follows me each day now as a mother. “The only disability we have is a bad attitude,” and that’s exactly how we have chosen to raise our children. Rowen was born with a few complications, but nothing that was life-threatening, and I thank God every day for that! Will he be challenged as an individual? Yes. Will I be challenged as his parent? Of course. His digestion will never be “normal” as the rest of us know and experience it to be. But it will be “Rowen’s normal.” He will have to be on meds forever, and he will have to watch his diet. But I remind myself daily of how many people in this world have to do just that, for hundreds of different reasons, not just IA! We all have something that we can quote to be a “disability” or just flat out “different” than what society views as “normal.” Whether it be VACTERL Association, autism, ADHD, OCD, shyness, being short, being tall, gay, straight, whatever. I don’t judge, and I don’t want my children to either. Nor am I going to raise my children to feel as if they have to hide who they are. Embrace it. Be proud of it. You are perfect in my eyes, and I hope that you grow up to be confident and strong individuals, regardless.