Roll With the Punches: When Eating is Too Difficult

Carli Valentine resides in Utah with her two wonderful children, Lochlan (1 yr) and Finnegan (6 yrs) and husband of 14 years. She is employed as a Cosmetologist and has her Master Esthetics License as well as a degree in Business Administration. In her spare time she loves to do volunteer work, help fundraise, and be involved in various activities within the Congenital Heart groups and Special Needs communities that she is a part of.

Our child was diagnosed with a Congenital Heart Defect when he was 18 months old.  Our journey suddenly took a scary turn when he began frequently vomiting solid foods around this time. A barium esophogram test showed he had a rare heart defect called a vascular ring (right aortic arch aberrant left subclavian artery). Part of his aorta was wrapped around his esophagus and trachea and strangling him. He also had a rare aneurysm called a Kommerell Diverticulum that caused additional pressure on his esophagus and trachea as well. We have had to deal with many different medical issues and two of the biggest concerns were his swallowing and eating difficulties. These are some of the most important things that I learned during my son’s journey: 

  1. Always follow your instinct. There will be times as a mother when you feel red flags are going up all over the place, telling you something isn’t right! Always listen to this! Don’t let others reassurances silence these warning signs. You know your child best!
  1. Knowledge is power! Always try to research your child’s defect. In doing so you can advocate the very best for them. You can help find the most effective treatments, including surgeons, therapists, and other specialists to ultimately provide the best possible outcomes! I wish I would have been told that realistically our feeding-issue journey was far from over! I wish I would have asked more questions from the start and would have researched more extensively so I could have been better prepared.
  1. Remember… Doctors are human too! I believe most Doctors are trying to do their best to give good care but they are only human and may leave out information accidentally or forget to help guide you to best help your child, so always ask a lot of questions and get referrals for other specialists, therapists, and treatments that may help. This will be very beneficial in helping your child and in building a map to success. After my child’s first surgery, I was naive and thought he would be “fixed.” I had no idea that I would need to follow up with years of feeding therapy, swallow studies, doctors appointments and even seek out a new specialist across the country to perform an additional surgery that he ultimately needed.
  1. Emotional feelings and stress fueled by social isolation are common.  Feeding issues can be extremely isolating and leave caregivers depressed and scared. My family often stayed home for meals, skipped out on many family functions and parties, and avoided going to restaurants for fear that my son would choke in public or projectile vomit when he was unable to swallow food properly. My husband and I always felt incredibly guilty eating in front of him because of all his challenges. This caused a lot of stress! Don’t forget to take care of yourself. Find someone to vent to, go to counseling, ask a friend or family member to help with a few meal times. As a parent, always remember that you’ve got this! You are truly doing your best and that is what counts the most. Remember that you can’t pour from an empty cup, so to give your child the best care, you must also care for yourself.
  1. Seek support from others who know your plight. It is so very helpful to find a CHD group, feeding difficulty group, special needs group, ETC., so you can gain support from people that truly understand what you are going through. They can relate to you, offer friendship and advice, and many times help guide you to ideas, therapies, and specialists that may help!  They can also give you moral support, hope, and can push for you to keep going and stay strong for you and your child!
  1. Be happy with progress! Don’t measure success as a comparison with other kids your child’s age. It’s easy to get caught up in a tangle of what your child “should be able to do”. Don’t dwell on this!! Focus on how your child is improving and the positive aspects you have been able to achieve with your child’s care. This is what is most important. When I have compared my child to other kids it has led to frustration! When I look at his progress and how far we have come, I feel positive and hopeful and proud. I can’t explain how happy you will be every time your child takes a step forward you will rejoice and feel it deep in every part of your soul.

Being a “heart mom” or “medical mama” is not an easy feat but it can be so rewarding! My son is 6 years old now. He continues to struggle with swallowing and is on thickened liquids to keep him safe. He can eat a bigger variety of foods after having his 2 heart surgeries,  with the help of various therapies and lots of continued practice. He has hit so many milestones and has shown so much overall progress. Even though he still has a good amount of hurdles to jump, his positive attitude never wains. He has an infectious smile and a friendliness that will light up a room and he makes friends with everyone wherever we go. Our family has learned to “go with the punches”. We have realized that “normal” is overrated and have decided to celebrate our amazing heart warrior and all his wonderful, unique qualities. We will continue to try to put together his healthcare puzzle and find ways to help him as best suits his needs. His future is bright and I am thankful to be a part of such amazing communities with good family support such as Mended Little Hearts has provided.

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