Our baby was going to be admitted to the NICU to be monitored, a feeding tube was going to be inserted into his nose since we didn’t know how long it would be until he was capable of having food orally, ultrasounds were to be done to make sure the rest of his organs were functioning properly. He had IVs in both arms, hands, feet, and even in his head. The neonatologist told us that the fear we were facing was second only to the fear that parents feel when they hear that their child could potentially have a life threatening illness. We were certain that he was right.

We were sent home, and I cried all the way there because he was going to remain in the hospital until he could take food from a bottle. Within the hour, we got the call that sets a parent’s absolute worst fear into motion. Rionn was bleeding internally and having bowel movements almost every 15 minutes that were straight blood. We rushed back to the hospital to be with Rionn. The doctor told us that they had no idea what was causing the bleeding. Ultrasounds were done to see where it was coming from, but they could find nothing to warrant so much blood loss. At that point, if they couldn’t get it under control, it was quickly going to become an issue of life or death. Everything else, all our other fears and worries seemed to melt away.

On his third day of life, our wonderful nurse Denise fed him his first bottle. Although much of it came out his nose, he was able to swallow, which was a huge triumph. Once he was able to have 2 ounces in under 20 minutes orally for 3 feedings in a row, they would be able to remove the feeding tube. We had our mission! Within the day, the feeding tube was removed, and almost miraculously his bleeding stopped.

Things were definitely looking up for our beautiful baby. On his fifth day, with the help of our wonderful nurses, Rionn was eating well and we were hopeful that he would be able to come home soon. On his 6th day of life, we got the results we were waiting so desperately to hear: we could officially dress our little baby in blue!  We could all finally breath again! 

He was discharged from the hospital but we didn’t realize that the real work and stress was only just beginning. Every feeding took at least an hour and a half. I pumped so that he could have the immune and nutritional benefits of breast milk so that took additional time. It seemed that by the time one feeding was done, it was time to start all over again. Our entire family was turned upside down by the enormous amount of time required just to get 3 ounces of milk into this tiny baby, not to mention the many doctor’s appointments and frequent illnesses. We had a bright and vibrant 2 year old daughter that required our attention, my husband travelled 3-4 out of every 7 days for his job, we had just opened The Little Gym 3 weeks prior to Rionn’s birth. Everything else had to take a back seat to this child’s fragile health, and we realized very quickly that having an unhealthy child puts a very serious strain on siblings, on your marriage, on your finances, on everything.

We celebrated Rionn’s 8th week and Thanksgiving in the hospital. Rionn contracted RSV and was admitted to the hospital for a week to help him breathe. It was terrifying, but he surprised everyone by making it through without being intubated.

His first surgery to repair his palate, address the testicles that had still not descended completely, and insert tubes in his ears was done when he was just 6 months old-a whopping 10 pounds. Prior to this, Rionn had failed 2 hearing tests, so we were praying that the ear tubes would allow us to better determine whether he was truly deaf, or if the recurrent infections he was already experiencing and drainage problems in the Eustachian tubes common to cleft palate children was causing a negative reading on the tests. We had anticipated that two surgeries would be needed to repair his palate, but when the doctor came out of his first surgery and said that she was able to repair it all we were ecstatic. Our happiness was quickly shattered when we learned that the surgery hadn’t healed as well as originally hoped, probably due to his extremely small size, so we could expect another surgery around his first birthday.

Because Rionn was constantly sick with various infections relating to the cleft, and permanent damage to his lungs from the RSV, we had to limit his exposure and take our daughter out of preschool. He had been on 13 rounds of antibiotics before his first birthday. We had to hire a nanny to stay at home with our children while I worked at The Little Gym and Shane travelled to earn an income. No daycare would commit the time needed to feed him.

Starting at 5 months, he had appointments every other week to monitor his weight gains or losses, and nutrition, at which point we found out that he was allergic to just about everything, including my breast milk, soy milk, and dairy.

At 7 ½ months Rionn was still not growing well, or gaining weight. He started receiving weekly services to address his oral motor issues related to the cleft palate.

A month before his first birthday, Rionn had a second surgery to repair the palate again and replace the ear tubes that had only lasted 6 months. Again, the tissue failed to heal.

Fast forward 18 months through another surgery-successful this time, 2 more hospitalizations related to breathing problems from the RSV contracted at 8 weeks, and about $60 thousand dollars in medical bills we have paid personally, in addition to the hundreds of thousands paid by our insurance company, and Rionn is a relatively healthy, happy and well adjusted little boy.

He still meets weekly with a speech therapist to address not only his speech, but his problems with food. All of the pain and discomfort from his many surgeries, aspirating food and having it come out of his nose has made Rionn fearful of food and anything near his mouth. He still only eats baby food, and although we have been successful in the last 2 months getting him to feed himself with a spoon, every meal prior to that was an hour to two hour battle of food refusal, vomiting, screaming, tears and more. Every day for 2 and half years he has teetered on the brink of having to have a feeding tube reinserted. Every bite of food represents another day of freedom for him and our family. He also meets weekly with an occupational therapist to address his oral and tactile sensory issues relating to food. We have visited so many doctors to help us find a solution to his problems with food, but are fearful he may take pudding and applesauce in his lunchbox to kindergarten. As bad as this all seems now, I don’t have to think back very far to regain perspective and remind myself that it could be worse. It could be much worse.

I still ask myself what I could have done differently to make this little boy’s life easier-to make life easier on us all. With the help of the March of Dimes, I will have my answer, we will all have answers. Because of the research done by the March of Dimes, we know that folic acid is critical during the phase of development that went so wrong with Rionn, weeks 7-9 of gestation. We know how to better treat illnesses he is susceptible to, and take care of the asthma that now affects him due to the RSV. Because of the work of the March of Dimes, families like ours can make their stories heard, so that other families might learn from our experience. Having a baby that isn’t born healthy, either due to prematurity or birth defect, is a life altering experience for everyone. The emotional strain affects family and friends, the financial strain impacts everyone, from the family, to their employers, to the insurance companies, to the American community when families have to claim bankruptcy because of enormous medical bills. No one is exempt from the enormous impact of the birth of an unhealthy baby. So make a commitment to join Rionn and the March of Dimes as we make it our mission for every baby to be born healthy.

Thank you for helping give every baby a healthy start!

Shane and Carrie Watts

Proud Parents of Eden and Rionn