Our Fierce Fighter

From time to time in Don’t Blink, I will refer to Sloan as “brave” or “strong.” Although I do my fair share of proud dad gloating, those characteristics I just mentioned are rooted in indisputable fact. Last night, my wife gave public legitimacy to the courage of our daughter.

Last night, Sid wrote this Facebook post.

In my wife’s social media post, she eloquently described the feelings of helplessness and despair that consume a parent when caring for a critically sick child. She expressed it better than I could, making it silly for me to even attempt to do the same in this blog.

However, based on the discussion I had with Sid after she published her Facebook post, I feel like I can offer a brief epilogue to her beautiful words.

Sidney and I kept quiet during and after Sloan’s Pyloric Stenosis battle. We didn’t want to scare relatives and friends. We didn’t want to solicit a storm of social media sympathy. We didn’t want to relive and answer questions about a traumatic experience.

During Sloan’s bout with Pyloric Stenosis and for over a year afterwards, we kept it between immediate family. Sidney and I are so thankful for the support of our parents. This photo shows our moms and dads with Sloan at MUSC.

They say time heals everything. Although I might not go as far as to say everything, I do agree that it heals most. A year after Sloan’s surgery, we have come to grips with what happened. At this point, we are more amazed at the talent of the surgeons who made her better than distraught over the unlucky condition she was dealt.

Sidney felt it was time to say something. After I read what she wrote, she asked me what I thought about it. I told her she did a great job. She explained that her main purpose in letting others know about Sloan’s sickness was to shed light on Pyloric Stenosis and reach out to parents who might have a child with the same condition.

Sid and Sloan resting the night before we left for MUSC Charleston.

Here is where I come in…

Pyloric Stenosis is a rare condition in infants that blocks food from entering the small intestine. In fact, the condition is so rare that under 200,000 infants are diagnosed with it each year. Food can’t enter the small intestine because muscles thicken and become abnormally large. Because food is denied entrance to the small intestine, the body does the only thing it can…it sends the food back up. Sloan would vomit violently, discharging the formula (or any other liquid) we had given her shortly before. It doesn’t take a doctor to conclude that it is a bad sign when the body can’t digest food.

Luckily, the condition is treatable. Skilled doctors can cut away at the thickened muscles and create a pathway for the food to enter. In Sloan’s case, she was initially misdiagnosed, with doctors originally telling us she didn’t have Pyloric Stenosis. This of course added misery to our experience (especially Sloan’s) but once medical professionals were able to see the blockage, we took Sloan to MUSC in Charleston for surgery. More on this in just a minute.

Sid feeding Sloan her first bottle after surgery.

What Sid and I want to do is to let parents who have a child with Pyloric Stenosis know that things will be okay. Once your baby undergoes surgery, which we understand is very scary in and of itself, he/she will go from throwing up at all hours of the day/night to returning to a happy baby who digests food normally.

Watching your baby constantly throw up is awful. Seeing your baby dehydrated and hungry is painful. Observing your baby hooked up to an I.V. is disheartening. Sending your baby off to surgery is downright frightening. But there is light at the end of the tunnel.

When we were going through this, our little family was blessed to have a couple who went through what we did. The husband offered me assurance and the wife offered Sidney assurance. Before Sidney rode in the ambulance with Sloan to Charleston, the wife gave Sid a pep talk, letting her know that relief would soon be in hand. It was comforting and it meant the world.

My mom holding Sloan in the MUSC hospital room.

It is our turn to take the role of the special couple that helped us. To anyone who reads this post today or years down the road who has a baby with Pyloric Stenosis or knows someone with a baby who has the condition: Please reach out. It doesn’t matter if you read my blog regularly or if you stumbled upon this post via a Google search…we would love to help you and pray for you.

This is Sloan being wheeled out of MUSC on a wagon after receiving a clean bill of health.

The person who has forever entered our prayer life on a nightly basis is Dr. Robert Cina of MUSC. We thank God constantly for his talent and skilled hands. He is the head surgeon who performed the successful surgery on Sloan, healing her completely. We are also eternally grateful to the entire MUSC pediatric staff for their care and compassion. Of course we will never be able to thank our parents enough for being with us every step of the way. Although the worst of Sloan’s Pyloric Stenosis episode only lasted for about a week, we certainly needed our support system.

Sloan is a healthy little girl who brings us so much joy.

Sidney planted the seed last night for us to give back. Hopefully, we will have many opportunities to do so. Don’t Blink.

5 thoughts on “Our Fierce Fighter

  1. Sid and Brent, even though I don’t know you and we’ll probably never meet other than here, I was touched by your post and am so happy to read your story. But more importantly, you and your little lady have come through a severe and unforgettable test safely and well, and are now joining in the huge task of making PS better known. Through posts like yours I grow in my understanding of what my parents went through because of me many, many years ago! But again, more importantly, you are raising the knowledge of PS among your readers and friends, and hopefully some of the medical community also. Via my Facebook membership of PS support groups I realise all too well how the occasional failings of medical professionals regarding the diagnosis of and support around PS adds to the pain and even trauma of the parents and babies concerned.
    PS is surprisingly common in fact. You mention 200,000 although I find that a rather confusing figure. More clearly, it affects between 2 and 5 infants in every 1,000 born in a developed country, so almost all of us would know several people who have had PS or been directly affected by it – as you as parents certainly were!
    Best wishes for a long and happy outcome for you both and for little Sloan! She looks great – thanks for sharing.

    • Hi Fred – Thanks so much for taking the time to comment. We would love to know the links of the PS support groups you are part of. Have a great day and we appreciate you reaching out.

      • Access to the largest and busiest Facebook PS-related groups is restricted to those who join them – as it is for many Facebook groups. The most popular by far is the “Pyloric Stenosis Support Group” followed by “We survived Pyloric Stenosis” and “Awareness of Pyloric Stenosis”. Using the Search box will give Facebookers the links to the above groups as well as a full list. Other helpful social media forums may be found under the BabyCenter, MedHelp, Patient, and Topix titles.

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