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)
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!
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.
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.
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
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.
Oh look at you perfect little angel because you have all the answers right? Don’t you dare call a stranger a coward You ignorant Wench.
you have no idea when me and my family have gone through With the palliative surgeries. If you think I’m a coward because I would have rather chosen comfort care after all the suffering then you need to get your head out of your little bubble . You need to realize it doesn’t work out so well for everyone like it did for you and your family. I envy your child’s success, good for them ! I wish it was a great choice for every single hlhs child but guess what, it isn’t.
After all of the pain and suffering she can’t be helped anyways She’s slowly dying and all the doctors have turned her back on my daughter, nothing can be done. Now I just get to watch her become increasingly worse day after day when I could have just spared her all of the pain in the beginning. And before you find another way to attack me you should know I wasn’t the one with the bad genes and I have four patents so eat me I’m anything but a coward and I did everything I could . You are the coward for name calling people from behind the comfort of your screen. If you saw how gray colored bloated and swollen eyed my daughter is, knowing she is not a candidate for any additional procedures, you’d never have the courage to say anything to my face, that’s facts. Be a better woman and learn from the pain of others . Don’t live in ignorance! And don’t bother replying , we both know you’re mighty behind a screen and you’ll never meet me so don’t waste your time
I am an HLHS Mom Who is extremely grateful to you for your courageous decision and for putting together this incredible website. I think if anyone in the world can understand me it could be you. When my daughter was diagnosed with this horrible affliction, she was taken away from me so quickly I had absolutely no time to react. I bitterly resent the hospital I went to for taking my choices away from me at a time when I was weak from a 30 hour long labor , overwhelmed and utterly exhausted. I have a theory that the hospitals push surgeries on these poor children because it makes them money. $$$$$$$$$! 🙁 🙁
I had the worst experiences in both hospitals they took my daughter to. If I had only had more time to really think it through and given a better and more fair picture of what life with this thing is actually like I would have chosen comfort care completely they just took that choice away from me . I have emotional problems and PTSD and all of my life has been ruined after all of the pain and the surgeries she is basically dying anyways so all of the people who say that we’re not fighting for our children can shove it up where the sun doesn’t shine . They don’t understand they’re just ignorant and they just follow doctor‘s orders without questioning the bigger picture they also have absolutely no right To say a darn thing to us if they’re not in the same shoes themselves. I was treated very poorly by nurses in the hospitals many of them are very cruel and they don’t really care at all the hospitals Try and get as many x-rays out of the poor children Once every night in fact when there’s already started showing it’s not necessary so you see it’s just for billing that’s just one example…and push as many things on them as possible .
I have a message for all of these hospitals : fuck you. our children are not your cash cows. We made them and we deserve the choice to just take them home and let them pass naturally.
None of the staff will have the courage to look me in the eye as my daughter is getting worse day by day and nothing can be done. No one knows what I’m going through with three years of sleep deprivation when my poor daughter can’t sleep through the night and needs me 24 seven sabotaging my career and my health. No one can look me in the eye when I have nowhere to take my daughter to without people thinking that I am abusing her just because her heart failure is so advanced with HLHS she has reddish undereyes. No one can look me in the eye when I am forced to wear a special T-shirt educating people on what’s wrong with my daughter so they don’t call the police on me again. No one can look me in the eye when we are suffering every day. Until there is a cure every parent should reserve the right to bring the baby home, PERIOD. Life with hlhs IS BAD.
A transplant is also not a silver bullet in fact it’s like trading one side of problems for another and not all children qualify for it . some of them become so weak that they can’t get anything else done like my daughter. Nobody can look me in the eye and understand what it’s like to go from being a regular person to being the parent of a special needs child in a world where people are ignorant and judge you for it. No one has any fucking idea what we go through unless they have also had the same experience. I am through with this life. If I can be of service to any family in doubt or in grief I am welcome to exchanging emails or talk. I think it’s borderline abusive how they brainwash parents into thinking they must fight for their child when in fact the true motive seems to be monetary in nature because the reality is that life with this thing sucks and the survivors grow up having a lot of problems , even with surgeries, shall we list them?
protein losing enteroparhy
Single Ventricle may take on a globular shape, fail
Limited ability to move exercise incapacity
Overall poor quality of life
Growing up with social stigma and judgments from ignorant people
Having to take medicines for life even without a transplant/ giving oral meds every 12 hours indefinitely
Issues that require further invasive procedures, such as a cath for closing ASD
Problems with the liver liver becomes swollen
Clubbing of the fingers due to living with low oxygen in the blood
And how can we forget death may occur at any moment
And the so-called experts don’t tell you about these problems after palliative surgery, or they may not always tell you about it making it seem like with the surgeries the child will be fine but the truth is But the quality of life remains very poor and this is simply indisputable. In the case of my daughter I really feel like it would’ve been better to spare her the pain of the surgeries and the trauma of being pulled away from her mother the grief that we felt— nothing can take that away from us no therapy no counseling no stupid bubble gum Band-Aid therapy can really fix the pain that we have felt because of these decisions that were taken away from us. Who are they to play God with our children and force their little bodies to live when they are so ill.
The only exception I have is if a parent is so extremely lucky to have a child with a very mild case of each delicious no pioneers and Boston Childrens Hospital can rehabilitate the left ventricle so it grows back to a normal size, but for many of us we don’t have the luxury of this opportunity if our children are born with missing valves in the left heart structures. I have studied everything about HLHS extensively , With thousands of screenshots of scientific publications detailing absolutely every detail and it is my sincere hope that I can play a part in obliterating hlhs from the world one day . But with the lack of sleep it’s very hard to study. I am welcome to talk to other families in grief and I hope that we can get to Swafford exposure at the serves to stop the Tairney from the money hungry hospitals turning our vulnerable children into cash making machines and anyone who says otherwise is simply blind or ignorant. Much love to other HLHS families.
People need to understand that hlhs is a term for a spectrum of severity of left heart structure underdevelopment, and can range from the most severe “slit like” left ventricle with fully absent mitral and aortic valves, to just mild left ventricle underdevelopment, and May or may Not be accompanied by several other defects, including but not limited to RSD, ASD, VSD, tricuspid valve regurgitation…. there’s an entire list of additional problems or defects that can accompany hlhs compounding its impact. So no two hlhs children are the same. Some have better chances than others.
People need to understand the surgeries don’t cure the problem, and that transplants often fail , that not all families qualify for transplant, that children die waiting for hearts, that a transplant requires a lifetime of immunosuppressants which render the survivor open to other illness with weakened immune system. The death rate climbs with time. If they manage to survive all three surgeries, not every survivor has a strong single right ventricle capable of sustaining them for long.
People need to understand the body is not designed to pump with one ventricle, and that over time it tires out, which causes all sorts of problems.
PARENTS DESERVE INFORMED CONSENT WITHOUT OMMITION OF LIFETIME COMPLICATIONS , TIME TO THINK, AND AUTONOMY OF THEIR CHILDREN. Enough is enough.