A letter to HLHS Moms

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 also made our decision out of the deepest love a parent can have. We too 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, 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. 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 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 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 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 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 everyone knows they are a wonderful and doing the right thing, regardless of their choice in parenting their baby. 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; 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.”

Please 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! Whoever road you’re on, you are a brave mama and doing the best you know how!

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

5 responses to “A letter to HLHS Moms”

  1. Crystal says:

    Your story is absolutely inspiring and your little Indy is such a beautiful little girl. I lost my daughter almost two years ago after she was born prematurely at 33 weeks. I know the heartache of losing a child and it’s not like anything else. What you are doing here, to help other Mom’s that may find themselves in a similar situation, is so brave!

  2. Amanda Sigley says:

    Thank you for sharing your story, which mirrors mine. Our son, Stephen Guy Sigley, was born five years ago tomorrow with HLHS. My husband and I made every decision with love for our child. He passed peacefully in our arms ten days later. Yes, we are strong. And we are the best parents we can be. Thank you for the beautiful website that is a tribute to the love you have and will always have for your child, and for letting others know they are not alone.

  3. Manjushree Yogesh Chavan says:

    My son is born with HRHS. He is 2 months old now and completely asymptomatic. Doctors say that he is going to have a long painful death as his oxygen supply will gradually decrease. I’m still struggling to make decision because I won’t be able to see him suffer like that for long time.

  4. Patrick says:

    Few congenital heart malformations have raised as many surgical, ethical, social and economic issues as the therapy for infants diagnosed with hypoplastic left heart syndrome. Before the 19, this complex malformation was associated with 95% mortality within the first month of life. In the past two decades, palliative surgery and cardiac transplantation have become management options, in addition to comfort care for the infant. These innovations have forced parents and physicians to make difficult decisions because the long term results of the additional treatment options are not known. This article describes the current risk factors, diagnosis, treatment and outcome of infants with hypoplastic left heart syndrome. Prenatal diagnosis provides families with time for counselling and for becoming more informed about management options. Surgical therapy provides hope for the survival of these infants, but their long term outcomes are not well defined. Comfort care in either the home or hospital remains an acceptable management option. More investigations to determine the long term outcome following palliative surgery and transplantation are needed before they become the standards of care. Keywords: Congenital heart disease, Diagnosis, Hypoplastic left heart syndrome, Outcomes analysis, Treatment

  5. Elizabeth says:

    The problem with “comfort care” is you will never really know. What if you tried? What if you could have your child for 5,10, 15 20, 30 plus years filled with love and memories. My child is an honor student heading to college. I’m so glad I chose life for him. He truly is a blessing. I think those who choose comfort care are cowards. It’s no more of a parenting choice than abortion.

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