This is a post that I haven’t wanted to write. Maybe somehow I felt that writing everything down would make it more real? I don’t know. But it’s something I felt compelled to share because it’s a big part of my life right now, a big part of this pregnancy. My baby has HLHS, or hypoplastic left heart syndrome.
I mentioned briefly in our pregnancy announcement that this pregnancy had been a challenge. And it has been. But it’s been more than just nausea and extreme exhaustion. Since around twelve weeks, we’ve been dealing with a series of possible diagnoses, which have brought us to the official diagnosis of HLHS.
So what is HLHS?
Hypoplastic left heart syndrome is a congenital heart disease in which the baby’s left side of the heart is severely underdeveloped. It also can affect other structures on the left side of the heart, such as the aorta and several valves. As far as seriousness, we’ve been told it’s about as serious and complex as it gets. Since the left side of the heart is responsible for pumping oxygen-rich blood to the body, the baby will be unable to survive without surgeries and medical intervention.
How did we get here?
To be honest, with Layla I opted out of almost all genetic testing. But after I suffered a miscarriage in November of 2016, I wasn’t quite as easy going about this pregnancy. My doctor offered a first trimester screening called a Nuchal Translucency screening (or NT Scan), and I opted in. At best, I figured it’d give me another opportunity to see the baby and at worst we’d have some addition info. The NT Scan is noninvasive, consisting of an ultrasound and blood test. It asses one’s risk for several genetic abnormalities along with heart defects. The day of that test was one of the scariest of my life.
I went in for testing (without Aaron) and noticed the sonogram tech was spending an extraordinary amount of time around the heart. Of course, she mentioned that the baby was being a bit difficult and in a hard-to-measure position, so I wasn’t overly concerned yet. But then she mentioned my OB was squeezing me in to go over results. And as I waited for the doctor to come in the room, I felt my heart start to race. I immediately saw it in my OB’s eyes and tone of voice: something was wrong. She told me that they estimated there was a 50% chance my baby had some sort of genetic abnormality. Most likely it was Trisomy 21 (Down’s Syndrome), or Trisomy 13 or 18, which do not sustain life. All I heard was “50% chance” and “does not sustain life.” I can’t tell you how devastated I was.
At that point, I was offered several options for further testing. I opted for the MaterniT21 screening, which was another noninvasive blood test. This tests for all three Trisomies along with several other genetic abnormalities. Then I waited two of the longest weeks of my life for results. They were all negative, meaning my risk was low. But since it was a screening and not a diagnostic test, there of course was no 100% guarantee. And so I was referred to a maternal-fetal medicine specialist.
When meeting the specialist, I was feeling a bit more optimistic. Our last results indicated low risk. But then a bomb was dropped. After spending quite some time with us, she shared that the baby’s left side of the heart was smaller than the right. And although she wasn’t 100% sure, she thought it might be HLHS. This was the first time that we heard how difficult things might get. Most likely I would be delivering at a specialty hospital. There would be surgeries, one shortly after birth. But she told us to be hopeful and referred us to a pediatric cardiologist.
The diagnosis
At 18 weeks, we met with the pediatric cardiologist. She spent the entire sonogram focused on the heart, talking about each and every structure with great detail. And she confirmed that it was in fact HLHS. She told us that on a scale of 1 to 10, this was an 11. And then went on to say she really could make no guarantees about quality of life. Babies with this diagnosis run that gamut. Some are pretty healthy kids, but some require heart transplants, have surgeries that begin to fail in their teens or twenties, and all require lifetime monitoring.
The day after our scan, we also met with a geneticist, who provided additional just-as-scary information. And then she recommended an amniocentesis. Of course I had googled the test before, knowing it was an option after my NT scan. And I wasn’t exactly excited about a giant needle going into my belly (or the risk of miscarriage). But I was in 100% agreement that we needed all the information we could get. Once the time comes for this baby to be born, I want to the doctors to be the most informed they can possible be. And honestly, the amnio was probably the easiest and most painless part of the day.
So far the preliminary results from the amnio have been positive. We received word with the FISH results just this week, and the geneticist confirmed that with 100% certainty the baby does not have Trisomy 13, Trisomy 18, Trisomy 21, or Turner’s Syndrome. We also opted in to the microarray, which should be available within a week or two with more detailed results.
How are we holding up?
This has been the scariest, most stressful, most overwhelming season of my entire life. This baby is something I desperately wanted and prayed for. And after six months of trying and a miscarriage, finding out I was pregnant brought so much relief and joy. But at times, all of the constant doctors visits, diagnoses, and series of tests have made it difficult to just be joyful and excited for the future. Of course I don’t want to give the impression that I’m not happy to be pregnant. I am. I prayed for this child and this baby is blessing straight from God. But that pure, unadulterated joy I felt with my first pregnancy…it’s just not the same. It’s tempered with worry, anxiety, and this innate, crazy-fierce mama-bear desire to protect this child with every ounce of my being.
There are days when I’m strong, completely faithful in the Lord and not worry-free but at peace. But there are also tough days. I’m only human. I get overwhelmed by fear, worry, doubt, and anxiety. And some days, maybe even a lot of days, I waver between all these emotions.
But through it all, I can say with great certainty that my faith is stronger than it has ever been in my life. I’ll be honest, the miscarriage rocked me a bit. I had a harder time with it than I’d like to admit, and I found myself pulling back. I spent less time reading my devotional and Bible and less time praying. But this trial has reignited my faith. I don’t know how else to describe it but as a deep desire for closeness and complete dependence on Jesus Christ. And for someone who never felt that need before, I really don’t know how else to put it in words. But that relationship, that strength, hope, peace, and firm foundation… I know that is what is keeping me afloat.
And although I struggle through this trial. When I take a step back, I ultimately feel blessed. Blessed by a strengthened marriage, by friends and family who have shown up and given me so much love, this blog for providing financial blessing and allowing me a happy place to be a bit more carefree. So thank you, from the bottom of my heart for being a part of this blog. I am very blessed by each and every one of you.
I am sorry to hear that your pregnancy has been filled with stress and worry. I pray that God gives you peace and strength through this ordeal and brings you joy in your journey with the new baby. God’s will is not always easy but it is good. Blessings to you and your family.
Thank you, Denise. You are so right. This is a major challenge, but we are choosing to focus on the good. (Or at least trying daily!)
Lauren I am so sorry that your baby has HLHS- I can only imagine what you are going through. It’s so brave of you to share and I’m thankful that we can be praying for you and supportive of you and your family! You will definitely be in my thoughts and prayers & know that the Lord definitely has a plan for this special and perfect child.
Thanks, Gentry. Your prayers and thoughts mean so much to me and my family.
Hi Lauren,
Just a random follower, but I wanted to say I’m touched by your courage and faith during this emotional time ?. Praying for you and your sweet baby and family! ?????????
Thank you so much for your prayers and sweet comment.
My heart goes out to you! My husband and I suffered a miscarriage in December after 2 1/2 years of trying for our second child and going through IVF and to say it was devastating would be an understatement. We were able to get pregnant during our second round of IVF (we have unspecified infertility which means they can’t find anything wrong) during February and I am 18 weeks now, but I still worry so much about the baby’s health and having a healthy pregnancy. I completely understand what you mean when you say the pure joy you had with your first isn’t what you have now even though you know this baby is a blessing from God. You are so brave to share your story and you are helping so many people with it. I will be praying for you!
I can’t imagine losing a pregnancy after 2.5 years of trying but am so happy to hear that you are now 18 weeks! Wishing you a healthy pregnancy, and thank you for your prayers!
My thoughts are with you. Reading your story hit me hard too, since my husband and I are looking to start our family soon. I wish you the best!!
Thank you so much Abby. Best wishes with starting your family!
Praying for you!
(I have a sorority sister whose son had a heart transplant when he was 8/9 months old. If y’all get to that point email me and I’ll put you in contact with her. I know how comforting it is to be able to talk to someone who has gone through the same thing as you.
That is so kind, Natalie. Thank you! If things get to that point, I will definitely reach out!
Praying that God gives you strength, peace, and comfort. Wishing you and your family all the best and sending much love…xo!
~Whitney
* Deuteronomy 31:8 *
Thank you so much, Whitney. That verse uplifted my heart.
Oh, my heart aches and I have a lump in my throat. After suffering two miscarriages last year (August and December), I understand where you are coming from. I am now 12.5 weeks pregnant, and really struggled with the genetic testing. We ultimately opted out, but after reading your journey, I want to revisit that option.
I’m praying for you, for your baby and your sweet family. Praying for peace, strength, and ultimately, His amazing healing power we know He has.
I can’t image what ya’ll are walking through, and all I can do is give you all my prayers. Thank you for sharing your journey, I know it wasn’t easy.
Stacey, I’m sorry to hear about your miscarriages. That pain and loss is all too familiar. Much love to you. But I am also so happy to hear about your current pregnancy! I definitely don’t want my journey to frighten you into additional testing. Pregnancy can be stressful enough as it is. Just follow your gut. Wishing you a happy and healthy pregnancy!
Sending you tons of love and prayers, Lauren. Life is such a roller coaster and times, but your positive outlook is such a blessing…
Jodie
Thank you for your kind comment, Jodie.
I am so sorry you are having to deal with this. Just keep your faith and lean on God to get you through this. I am a firm believer that things happen for a reason and that God will get you through it, no matter what. May God give you peace and comfort during this time.
Thank you, Libby. Like I mentioned in my post, some days it feels like I’m living on faith alone! But I know it will pull me through.
I’m so sorry to hear this! But I know you, Aaron and the doctors will do all you can to help this baby thrive! I always hate saying this, but God only gives us what he knows we can handle. My thoughts are with you all.
Thanks so much, Megan.
I’m so sorry to hear about your story but I do want to offer you hope. My best friends daughter was born with HLHS 12 years ago and is the most beautiful, strongest little girl I know. If you’d like, I can provide you her contact information. She may be able to help talk you through some of the anxieties you have for your babies future and the surgeries her daughter had to undergo as an infant.
Andrea, you have no idea how much encouraging it is to hear positive outcomes. The doctors of course always want to give you the scary possibilities, so it gives me hope to hear about the successes!
So sorry to hear your news Lauren. It may or may not help, but I have a relative who had a baby with this same condition and the surgery was a complete success and she is a healthy and happy 5-year-old now. I wish you and your family all the best.
It absolutely helps! It is so reassuring and comforting to hear about successful outcomes. Thank you so much for sharing, Stacey.
Let your Faith be bigger than your fear! Hugs to you and your family.
Thank you, Lori!!
I am for sure praying for you. I was born (at the old MCV in Richmond) with a CHD. Not as serious as your little one, but I received amazing care throughout my childhood at MCV (how VCU Health). Hugs friend!
I appreciate your prayers, Lori. And thank you for sharing your story. I’m so glad to hear you are doing so well!
My love and prayers go out to you sweet girl. I am so sorry you are going thru this and my heart hurts for you. My prayers and blessings are for the best possible care, for the Doctors minds and hands to be guided through out your pregnancy and birth of your precious little one and for healing hands and miracles too.
Xoxo
Thank you so much, Karen. I can’t tell you how much your prayers mean to me and my family!
Adding my prayers to all the others. Know that you are held gently by God through it all. There is grace to be had.
Thank you, Nina!!
So sorry you’re going through this Lauren. Such a roughing and beautifully written post full of faith. Thinking and praying for you all and your precious baby.
Amy Ann
Straight A Style
Thank you so much, Amy Ann. Your support means the world.
Lauren! Thank you so much for this beautiful post. I cannot imagine what you are going through, but you are definitely handling it with grace and courage. I have loved getting to “know” you through this crazy blogging world and will be praying for you and your family! Your little is one lucky babe to have you as a mom! Much love!
Thank you so much, Lindsey! You are so sweet and your prayers are appreciated more than you know!
Lauren,
I have been following you for years. I also have a daughter named Layla 🙂 She turns seven next month. We had a chemical miscarriage in November and March (3 weeks) and a miscarriage last month at 6.5 weeks, they truly test you to the core. It strengthened my marriage, but much like you, I struggled with my beliefs when they happened. I am so sorry to hear about the baby’s diagnosis and will keep you both in my prayers. I have a friend whose daughter was born with a heart abnormality and she is a healthy and happy two year old now (after a surgery at birth and five months I believe). Xo
Thank you so much for your comment, Leanee. I’m so sorry to hear that you have also struggled with miscarriages. Sending prayers your way for a healthy, happy rainbow baby.
Your story breaks my heart. Praying for God to keep his hands on your precious baby. Also, praying he gives all of you strength as you endure the difficult days to come. God Bless!
Thank you, Tina. I can’t tell you how much your prayers mean to us.
I can’t imagine how hard it was for you to publish this, and I felt sick to my stomach as I read your journey through this, I can’t imagine your fear of now knowing and waiting. I hope the answers you’ve been provided, even if they’re not the ones you wanted, have helped ease some of that fear. Your message of faith is so powerful. I will be praying for all four of you!
Thank you so much, Meghan.
I dont comment often, but a friend of mine just had a baby girl with HLHS just two months ago. Their baby girl is doing phenomenal after surgery and praying you have the same experience.
Thank you for sharing, Sarah. That is SO encouraging to hear!
Hi, a mutual friend forwarded this post to me hoping i might be able to offer some support as I have a son was born with HLHS. I’m more than happy to answer and questions you may have, be a venting ear out a shoulder to cry on.
Our son was born 3/12/14 and we actually thought he was a perfectly healthy baby but at his 24 hour pulse ox test that all changed. He’s endured a total of 3 open heart surgeries one being a Heart Transplant at 11 months old. He just turned 3 and is doing fabulously!!! He is such a blessing!! His journey has been long all added up over 18 months spent in the hospital.
We have a facebook page dedicated to him for updates etc. Its http://www.facebook.com/GabrielsHeartJourney
Please feel free to contact me anytime. I’m also a member of several online chd support groups that truly make all the difference going through what we go through.
Many prayers!
Amanda Reck
Hi Amanda,
Thank you SO much for taking the time to comment and share your story. Hearing that your son is doing so well is so encouraging. I’m looking forward to connecting. <3
Hola, te entiendo , yo no he podido ser madre , nos hicimos una fertlización in vitro , quedé embaraxada y también tuve la pérdida de mi bebé. No entendía por qué mi Dios había permitido eso, sin embargo, Dios es bueno en todo tiempo, sólo debes mantener la fe en Jesús. Espero que todo salga bien , muchas bendiciones
Hola Stefania,
Muchas gracias por tu comentario. Lamento muchísimo que tu también perdió un embarazo, pero tienes razón que Dios es bueno. Nuevamente, gracias. <3
I have only recently found your instagram and blog after searching for something fashion related. I just read every word of your post and I want you to know I am praying for you and the precious little one you are carrying. There is nothing more fierce than a mama’s love, accept that of our Heavenly Father. I know you will continue to find the strength and peace you need. When it seems too much, just know you have so many of us who will join you in prayer! Much love to you!
Thank you so much, Michelle. Your comment truly touched my heart. I am truly blessed by your support and your prayers!
2 of my children have a congenital heart defect. This will be the hardest time of your life, there is no sugar coating it. But prayer and faith will pull you through. You will undoubtedly witness many miracles with your baby, I know I did. I have 1 daughter who they said was “incompatible with life” due to her CHD and she had surgery right after being born. They told us all of the scary statistics and she is now an extremely healthy 4 year old. Our other baby with CHD passed away at 4 months old but she also had issues with her lungs. Both of my daughters changed my life in such an amazing way. Regardless of what path you go down you will come out stronger, have more faith, and you will have an immense love for your child. Best of luck to you!
Alexandria, thank you so much for sharing your story and faith with me.
Thank you so much for sharing this with all of us. I will be thinking and praying for you and your family. My son was diagnosed at 2 years old with Stage 4 High Risk Neuroblastoma, and he has been undergoing chemo, transplants, immunotherapy, and more for the last 18 months. So I feel like I have an idea of what you are going through and what you have ahead of you. My advice is to continue to draw closer to your husband, family, and church, and to find support organizations. There are so many foundations and organizations that have helped us during all of the hospital stays, and I hope you are able to find that kind of support network as well.
Heather, I’m so sorry to hear about your son. You will be in my prayers. Thank you for the advice also! I’ve already found one online support group, but I know I will need all the support I can get.
Thinking of you sis!! You can do this and so can your baby! So sorry you are going through this!
Thank you for the encouragement, Tara!
I am praying for you and your family. I admire your courage, faith and grace! ❤
Thanks, Michelle. Your prayers are so appreciated.
I am late to see and comment on this but no less upset for you – how difficult this must be! But look at the outpouring of love and support you’re getting through the blog, I’m confident you’ll be experiencing it from friends and family too. The only upside to this upsetting diagnosis is that they know from the beginning so can put a plan in place! My friend’s rainbow baby had heart problems and despite all that she is a beautiful, strong and talented little girl – although I guess I should say young lady now!
Will be praying for you Lauren. It won’t be easy, I can’t imagine anything like this ever being easy, but having lots of help and support and care around you will make a huge difference.
Thank you so much for your kind words and prayers, Mica. The outpouring of love and support has truly been such a blessing!
I have nothing but well wishes for your family. I hope your baby will be better soon. I can’t even think of words to ease how you’re feeling right now, but do remember that things will always work out better in the end.
Jessica | notjessfashion.com
Thank you, Jessica.
I’m so sorry Lauren…..I know that you know God is with you and you r family and this baby. We haven’t been able to get pregnant in 7 years and got the diagnosis that we would most likely need surgery if we wanted to have another and it is not even guarunteed….so I know what it’s like to have your faith tested.
Also when i was pregnant with my son i was told to abort him at 26 weeks because he had almost all the markers of down syndrome and holes in his heart. I was shattered but i knew my only job was to love my unborn son and give him a chance at life and whatever God’s plans were I had to accept them. Our son was born 100% ok. The reason I’m telling you this is because I know what your feeling and My thought and prayers are with you in this scary season of life. Trust in HIM is all you can do sweetie. HE loves your child and knows you were the perfect mom to care for that little one
Erica Valentin
http://www.EricaValentin.com
Erica, thank you SO much for your comment and words of encouragement. You really touched my heart. I’m so happy to hear that your son is okay.
Lauren, I am very sorry for what you have gone through. My cousin has a 13 year old boy who was born with HLHS. It was tough, but there are so many medical advances now. He plays baseball and is a very active boy. I hope that this encourages you. I admire your faith and your strength and that you are giving your baby a chance. I am praying for you all!
Rochelle
I found your story through a hashtag search for HLHS related stories. I know what you’re going through. My baby has HLHS. He is only almost 5 months old. He had his first open heart surgery at 3 days old. He then ended up with an awful intestinal infection referred to as NEC. At one point, he coded and required chest compressions. We finally brought him home for the first time at 2 months and one day old. Sadly, after a week home, his big sisters (ages 5 and almost 3) came down with runny noses and even though I did everything I could to keep everything sanitized & him away from them, his little immune system just couldn’t keep from getting it. His runny nose was diagnosed as caronavirus & landed him in ICU. After 2 weeks at the hospital, he came back home. 2 weeks home and he started coughing…this time, rhinovirus, with decreased oxygen levels & his heart failing to squeeze well. Back to ICU. Not in ICU currently but tomorrow marks 5 weeks since he was admitted. We had to postpone his second open heart surgery due to illness & oxygen issues, but right now the Glenn operation is not an option and he is being listed for transplant. My miracle boy needs a new heart and we’re now waiting. Waiting for a heart, waiting to bring him home. The Seattle Children’s Hospital where he is, is over an hour from home. So juggling life has been hard. I’m writing because I know what you’re going through, I know what you’re feeling, what you’re fearing and what is coming. And I wanted to tell you that even though we don’t know who each other are, we are HLHS moms, we are heart moms….and heart moms need support too! If you ever want someone to talk to, vent to, ask questions, etc., please feel free to reach out! I don’t do twitter, but I am on Facebook and have shared a lot of my journey publicly. (Search MandyReneé Richmond. My current profile photo is me holding my baby.) Even if you just wanted to quietly go through my posts without reaching out, feel free. But know I’m always here. HLHS is the most severe heart defect there is. The journey is hard, but the HLHS babies are FIGHTERS! You will be in my prayers.
Lauren I am sending you so much love!! I thank you for sharing this with us and for being so open. Im thinking of you and your sweet growing baby!
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Hey Lauren,
I just came across your blog as I am researching on this diagnosis of HLHS that my husband and I were given about a week ago about our daughter. I know its been two years already and I just wanted to know how everything went and how your baby is doing. You can email me if that’s ok with you. I would love to connect with you as we brace ourselves for the unknown.
Hi betty,
On the same boat here i was doing some research and came across this blog my husband and I just got this diagnosis about 4 days ago and its been hard im assuming you had your baby and would love to know how everything is going.
Hi Lauren,
I know the post is a little bit old, but I am sorry your baby was diagnosed with HLHS. I was 26 weeks pregnant when we lost our first born baby girl, Abby, to HLHS on October 1st 2022. It took us more than two years to be able to conceive her plus two rounds of IVF. Your story reminded me of ours, since all our tests came back normal. No chromosomal abnormalities detected… No reason to think that our baby will not have developed her heart correctly. HLHS was detected during an ultrasound at 19 weeks, and follow through until the end. I still don’t understand what caused this condition since I took care of myself during pregnancy and followed every recommendation there is to follow for a healthy pregnancy. Our story did not end well, we found out that our baby did not have a heartbeat at an ultrasound at 26 weeks and it was devastating. I was wondering what happened with your baby after the diagnosis, were you able to carry your baby to term?