In February 2016 our world changed forever. We went in for our routine 20 week ultrasound and expected to hear nothing but good news. We had 2 other normal pregnancies and healthy children, so our minds were far from ever thinking this time would be any different. At the end of the ultrasound our OBGYN told us that there was a problem. We went numb and started crying. He told us that he believed Indy had HLHS, but we needed to see pediatric cardiology for confirmation. I had been an ER nurse for years prior to becoming a family practice nurse practitioner. Having medical background and knowledge, I knew I had to find information on what HLHS meant, as I had not heard of it before. I searched for information and options, and what I found terrified my husband and I. We looked at everything we could, and I filtered the information I was looking at to make sure it was from reputable sites. Not one thing we found were we okay with that being our daughter’s life. In searching, and I mean hours upon hours, and days after days, all I could find for options were termination and the 3-staged palliative surgeries. Until one day, I came across that hospice, or comfort care, was an option. My husband and I knew that was our decision. What we learned was that HLHS was NOT a fixable heart defect. Palliative surgeries would only prolong life until a transplant would be needed, and that’s a whole new game. We knew, that if in fact it would be confirmed Indy had HLHS, we could not do surgery. We knew we could not ask our daughter to fight a fight she could not win. We didn’t just think “save our daughter”. We thought about what her life would look like if she lived to be 7, 10, 18, 25, etc. What would her life be like?? What we knew from all our research guaranteed that her life would be beyond difficult and painful. We knew that we would not want that life for ourselves if we had HLHS, so we weren’t going to force her to have that life. Our decision for comfort care was made out of the most pure love we had for Indy.
Not even 2 weeks after receiving the initial preliminary diagnosis, HLHS was confirmed with the fetal echo at the University of Iowa Children’s Hospital and Clinics. That day we were offered termination 3 times, which we felt was not the right choice for us. We then met with the cardiologist where he discussed the surgeries. At the end of the appointment there had been no discussion of comfort care, so I asked. Our cardiologist seemed to be taken back, as though he hadn’t ever had a parent ask that before, but he was very respectful. He thought that it would be an option. Fast forward a few weeks and the cardiologist called to tell me that the hospital would need to have an ethics meeting to make sure that our choice for comfort care was ethically appropriate. A few weeks later he called again and informed me that in fact the hospital would support our decision and not a single person disagreed with our choice during that ethics meeting. That spoke words to us. We knew that a medical team cannot say it’s okay for a person to die if in fact the defect is treatable and manageable. For everyone, including the cardiothoracic surgeon, anesthesia, neonatologist, and other staff, to agree with our decision meant that they knew medically that HLHS leads to a grim life. If in fact HLHS would be fixable, they could not ethically support our decision.
The next few months were spent planning Indy’s funeral, enjoying time with her, making every moment of the pregnancy count, and talking with the hospice nurse. From the moment we made our decision for comfort care, we never looked back or had regrets. And I can honestly say 4 months after her passing we still have not had any regrets in our decision. Don’t get me wrong, it was not an easy decision to make. We wanted so badly for her to fight, to bring her home, and for her to have a “normal” life. We had to remind ourselves that HLHS would not give her a great, or even good life.
Fast forward a few more months and it was induction day. Due to my 2 previous very fast deliveries, I was induced so we could ensure she would be born in the hospital. The labor was seemingly uneventful and easy, and at 8:15pm our sweet girl made her arrival. We had immediate family and a few close friends of mine there to meet her. Our family gathered in our room and we loved on her. Indy got to meet her older siblings, Kail (2 years 10 months) and Jada (20 months). We had Indy baptized with the hospital Chaplin, and then family went home since it was almost 11pm. We loved on her as much as we could through the night, and the next day family came back. We had quality time with Indy and she was never put down. She received countless hugs, kisses, and snuggles! Prior to the induction I made a list of things I knew I wanted to do with her, or get while she was alive. During the day we took endless pictures, videos, read her books, played music, and so much more. It was touch and go throughout the day, so we made sure to keep her comfortable with Morphine and Ativan. At 5:51pm she passed away peacefully in the arms of my husband and I. It was by far the most painful thing we’ve ever experienced, but with it we also felt a sense of proudness; and these emotions are still true to this day, 4 months after her passing. We are so incredibly proud of how we chose to parent Indy. We knew that surgeries would be doing something TO her, not FOR her. In her beautiful 21 hours with us she didn’t know an ounce of pain. My husband and I chose to give her the best life we knew possible, and in doing so we will endure the grief of missing her forever, but we can feel comfort in knowing we did not have Indy fight a fight she could not win. We are passionate about our decision in parenting Indy and would not change a thing if we could go back. All She Knew Was Love.
Thank you for expressing your feelings and beliefs just as I feel mine. I have longed for grandchildren and was so excited to learn that my daughter was pregnant. I was at work on a cardiology unit when my daughter and son-in-law came to tell me what was found on the ultrasound. The midwife was nice enough to call me at read me the ultrasound report. She said it was good that I had cardiac background because I would be able to “prepare them”. I talked to people at work about the results. I had a doctor very bluntly explain what the treatment and life would be like. Of course, I wanted to vomit. I looked online at reputable sites to get information about what the ultrasound showed and that was when HLHS came into my life. How do you “prepare ” your daughter, who has been dreaming of children, what life would become for the baby, her and her husband?
People said to me and my daughter “I’m sure it’s nothing. It will be okay.” I found out that I hate that four word sentence. HLHS is the opposite of okay.
Having a cardiac background and thinking of all of the complications and what I see us do to keep patients alive because the family isn’t ready to let them “Go to heaven”. I have come to believe that there is a “fate worse than death”. I believed that what the baby would have to go through was unexceptable. My thought was “let that baby go to heaven”! It was not my decision though so I kept that to myself. We waited for the weekend to pass and I went to Iowa City with them. I sat and listened to what was said to my daughter and son-in-law. When the dust settled I asked the cardiologist questions. “How long will the baby be in ICU?” “How long will the baby have a feeding tube?” “How do people manage this.” My daughter heard the answers and then asked to doctor “What happens if we don’t do the surgery.”
We are now waiting for my grandson to be born and die. My daughter said she was going to make this a good pregnancy and enjoy the baby while she has it. We sit and watch her belly move and feel him kick and celebrate those moments.
We have asked some hard questions. “What do we do about a funeral?” I am scared for the end of life but still love knowing that right now, the baby is okay.
I think your story is so very beautiful. I bet you have helped so many people. I admire this courage more than I have the words to express. My wonderful friend and her family will go thru this, and your words help us to understand their experience. Thank you…Sally
Hi Indy’s Mom. I’m writing from Peru. First I say what a beautiful name is Indy. On december 2016, we were diagnosed with HLHS for my second child the same way as your little angel, Alexander was born on April 21st, here in Peru we don’t have surgery as a real option -even though we were expecting for that- but an option was offered to us some days ago; my wife and I rejected it for reasons you explained in this article. Because we didn’t make a decision from the beginning, Alexander is medicated with prostaglandin and he is in a Public Hospital but today we decided to bring him home. I’m really feel guilty for not being with him all the time because of hospital restrictions and because of our 2 year son Drazen needs attention too, but every second we spend with Alexander is precious and we give him lots of love. Your article help me to understand that Alexander should be with us at home (as we recently decided) and it gave me some ideas of how spend time with him. Thanks very much. I hope my English was -at least- understandable.
Recently we received our amnio results showing an imbalance on chromosome 18- one piece of genetic information missing, and another added from another chromosome. What even lead us to the amnio is that we had a detailed scan of our baby, Finn, at 17 weeks and a definite heart defect was noted but not diagnosed at that time. After we received the amnio results, we had a follow up scan already scheduled to go in and look at Finn’s heart since we were at our 20 week mark by this time. The scan revealed what my specialist referred to as, “a very complex defect”. We asked questions, and the specialist confirmed that the defect was hypoplastic. We are set up for our echo in a few weeks to reconfirm.
I have read and read, and tried to gain some knowledge on HLHS, and i keep coming back to this site over and over because i find peace in reading these beautiful stories, and it makes me feel stronger. My baby is not only effected by HLHS, he is genetically unbalanced and i refuse to put him thru pain and suffering, and risk all the beautiful moments shared in these stories, that i want with my Finn. My husband and i will be choosing the non surgical route for our son so we are able to celebrate every moment of his life with love, as we want.
Thank you so so much for sharing these stories- because it has touched us.
Hello and thank you for that beautiful story. And what a beautiful picture <3 My daughter had a very similar story and we were prepared to support them through what we pictured would be a very similar outcome. Now here we are 2 weeks later and I am trying to learn what is common among newborns on “comfort care” with an HLHS diagnosis… would you be willing to share what resources you have on that? I’m wondering how often they persist, nursing & living nearly normal lives and what to expect. Thank you so much.