A Letter to HLHS Moms

Dear mother who received a HLHS diagnosis for your sweet baby,

You are strong. You are courageous. You are brave. You are a beautiful mama who is just trying to mother your child the best way you know possible with the utmost love you can have for your child. There is nothing you could have done to prepare yourself for what was to follow receiving such a devastating diagnosis. You did not choose this, you did not want this, but this is the card you were handed.

I am also the mother of a sweet little girl, Indy, who was diagnosed with HLHS at our routine 20 week ultrasound. What you hear next might come as a shock to you. We chose hospice for her and she lived a beautiful 21 hours before being called Home. I am writing this letter to every mother who has received a HLHS diagnosis for your baby, regardless of what road you went down. It doesn’t matter if you choose palliative surgeries or hospice. You are a wonderful mother and your decision was made out of so much love for your child. Don’t let anyone tell you otherwise.

The road is not easy whichever path is chosen, but there is no wrong path. And whatever path chosen, it does not make you any less of a mother. As a mother who has received this diagnosis for your sweet baby, I’m sure you can recall the agony, despair, hurt, and fear surrounding the initial diagnosis. Desperately searching for answers, more information, and the chance that it was a misdiagnosis. You likely can relive that day and the days following, as the pain of finding out your child’s heart was imperfect is etched into your mind forever. I am sorry your precious baby had to receive this diagnosis.

My husband and I chose the non-surgical option by allowing Indy to live her life naturally. This option is definitely going against the mainstream, however, it is not a wrong option. Those of us who chose this option made our decision out of the deepest love a parent can have. We were given the chance to parent our child the way we knew best. For those who chose surgery, your decision for parenting your child is also not a wrong option, as you also made your decision out of the deepest love for your child. Given such a devastating diagnosis, with no cure or fix, we all faced difficult options and had to choose what we felt was best for our baby.

The bottom line is, this diagnosis is not as simple as 2+2=4. That is the only correct answer for that equation. HLHS has many different severities, there can be other cardiac defects in addition to it, or there may be no other cardiac defects other than HLHS, and people come from different beliefs, backgrounds, support systems, and parenting styles. However, we all have 2 things in common: 1) We love our child with the deepest love there is, the love of a parent. 2) We were all given the chance to parent our child the best way we knew possible, driven by the love we have for them.

With HLHS, there really are no good options, as this diagnosis is extremely severe and not fixable. I guarantee that as a parent, when you were presented the options for this diagnosis, there was never a sense of relief knowing it would be a quick and easy fix. What you learned is that it can be managed, although very challenging, but it cannot be fixed. I’m sure there is not a single HLHS mom out there who was thrilled and relieved to hear their baby had HLHS. So, remember the pain you endured upon receiving the diagnosis and trying to decide how you were going to parent your child, the pain is there no matter what the parenting choice or outcome. Please keep in mind that although someone else may have chosen a different option for their baby, it does not mean they loved their baby any less or that they are any less of a parent. We all love our babies more than anyone else could; after all we carried them, birthed them, and we are their mamas. Whatever decision you made, please know it is the right one and I hope it is respected by others. You are not any less of a mother because you chose surgery or because you chose hospice. You are a wonderful and strong mama who is parenting your child the best way you know possible. Even if your child is not here today, regardless of your parenting choice for them, you are still parenting them and love them. Good job mama!

We, as mothers of a HLHS babies, need to support one another, give each other credit for being the best moms we know how to be, and loving our child unlike anyone else could. Your decision was the right decision and you are a great mom!

I wanted to write this letter so every HLHS mom knows they are wonderful and doing the right thing, regardless of their choices in parenting. During our journey with Indy I received quite a few disheartening comments from other HLHS mothers, whom I did not personally know, simply because our parenting choice was not the mainstream choice. Our parenting choices may have been different than others, but it doesn’t mean they’re wrong. We donated our daughters heart to University of Iowa Hospitals and Clinics and we pray they can use her heart for research and advancements to help all the living and future HLHS children! So far, they’ve been able to do some pretty amazing things with her heart and get some incredible images!

These are just a few of the comments I received during our journey:

“I feel obligated to tell you these babies can live and thrive! I can’t believe you’re not giving your child a chance.”

“I can’t believe you’re letting your baby die.”

“I don’t think I could ever be okay with that decision, I think I would have regrets.”

“Why aren’t you doing surgery? Are there also chromosome abnormalities?”

“I can’t believe you’re going against all medical options for your baby.”

“I beg you not to give up on your baby.”

“I urge you to get a second opinion.”

Remember, we’re all given the opportunity to parent our child the way we know best. The decision was not easy or pain free for anyone. Everyone who has ever received a HLHS diagnosis for their precious baby has come up with their decision through countless days spent looking at all options, meeting with specialists, having tests run, understanding what each option would mean (now and in the future), searching for other families and stories, and so much more. Give yourself credit! Whatever road you’re on, you are a brave mama and doing the best you know how!

Amy Thurm, proud mother to Indy (6/12/16 – 6/13/16)