20 weeks pregnant, baby boy just diagnosed with HLHS (Hypoplastic Left Heart Syndrome)

[megmac]

Hello Mamas,

I'm a shocked mama of a 17 month-old boy and am pregnant with our second little boy, who recently received the diagnosis of HLHS. We haven't yet decided whether or not to pursue the series of 3 surgeries or to allow him to pass away with the help of hospice, but at least we have a while to process our emotions and make that decision.

Are there any breastfeeding, co-sleeping, baby-wearing mamas out there who have navigated the waters of open-heart surgery for a newborn?

How much can we "push back" against standard NICU policies when it comes to my son and his condition? Specifically, would he need to be whisked away at birth for health concerns, or would it be possible for us to hold him and breastfeed until he went in for his first surgery? From my understanding, they keep the temporary artery open with medicine until the surgery, so would he be under such immediate danger that he couldn't be loved on by us? I'm also concerned about HLHS children needing to be on feeding tubes because they develop an oral aversion due to being on a ventilator (or is it just that they don't get to practice suckling right away and lose their instincts?) Could this be helped if he were allowed to breastfeed pre-surgery?

I guess in general I'm concerned about our ability to meet our son's emotional needs in such an environment.. I could find a peace with practices and procedures that are absolutely necessary for the physical health of my child, but I want to know what, if anything, can be negotiated because it's simply standard protocol.

Thank you SO much in advance!

Warmly,
Meg

[Zan&Zav]

I have no experience with your siuation, but couldnt read and not post. ((((hugs)))) I'm so sorry you are going through this.

[askew]

I don't have experience with a baby with heart issues, but I did have a baby spend two weeks in the NICU. I have to say, our experience with the NICU was a pretty wonderful one, all things considered. They were very supportive of my wishes. Never asked me to give formula or a bottle after I expressed I did not want that. They even put in an IV to do feedings so that we could breastfeed and not worry about caloric intake in the first few days. I found the nursing staff to be really caring and supportive, and wanting to do right by all of us. Some of the Doctors were a little panicky- but we had no idea what was wrong with dd until after a few rounds of tests came back. So it was all guessing and worry. I think a lot depends on the hospital where you deliver as well, so I advise checking it out and meeting the NICU staff.

We had a cousin who had a baby that needed heart surgery.They did the first at 5 days, the second at 4 months and I think he needs another valve or something in a few years, once he outgrows what he has now. Not sure what the condition was called though. He is thriving though, and the joy of his families life.

[2boyzmama]

Oh mama!

Congratulations on your little boy, have you named him? If you want to share his name, I'd love to know it

A lot is going to depend on your decision. If you choose to utilize hospice, then you can do anything you want with your son immediately after birth. You will have to write a very clear plan of care, but you can stipulate exactly what medical services you want (nasal canula, for example, ng-tube maybe) and which ones you don't want (vent, g-tube, resuscitation) You can request that he never leave your side unless you ask for it.

There was a blog I once read, or maybe just a story on a webpage, about a baby girl born with Trisomy 18. T18 is fatal, usually in utero, almost always very shortly after birth. Her parents chose to let her be born and had a team of nurses and drs that assured baby's comfort only. The parents got 3 days with their baby girl and she died peacefully in their arms. The mom wrote of it so beautifully. The medical team sounded so wonderful!

If you choose to try surgical correction, then it may be harder to have the kind of bonding most attachment parenting followers are used to. Your son will need to be assessed immediately by a Cardiologist and will be taken to the NICU to be stabilized as needed. Once stabilized, and once his condition is fully assessed, you will have to begin negotiating his care. Likely he won't be able to breastfeed simply from an energy/calorie/stress concern. He probably won't be able to bottle feed either. But you can sit next to him, physically touching him, smelling him, seeing him, while you pump. And you can be sure that your liquid gold gets to him. You can bring articles of your clothing, or perhaps a soaked breast pad to put in his isolette so he smells his mama. You can be at his side as much as is physically possible (taking into account your needs, NICU life is hard!)

My son does not have a cardiac defect, but he has several other defects and medical issues and we've spent lots of time around hospitals with him. I've found that discussing things with an open mind, politeness, and calmness is usually well received. Make it known right away (before birth!) that it's your desire to hold your son as much as possible, that it's your desire to do as much of his care as possible (diaper changes, feedings, bedding changes, etc) Know that you can still decline all of the standard things that many AP mamas choose to decline (Hep B vaccine, eye ointment, circumcision--please don't even consider this!!) You also can ask that any treatment be discussed fully with you. For example if they want to use fortifier in your milk, ask for the reasons why and what other options there may be. It might be the right decision (he may need the calorie boost) but that doesn't mean that it has to happen without your knowledge and consent.

I have to go, but again congratulations on your son, and I wish you peace in making your decision. I hope you stick around here with us!

[mom2lo]

There is HOPE for HLHS!!!!!

Hi, Meg!
I know all too well what you're feeling right now. The emotions, the questions, the fear... I was 20 weeks pregnant with our son, Chase, when we found out he had HLHS. We were beyond devastated. The first 24-48 hours after the diagnosis, we were in tears, completely unsure of what the future held for our family. However, my husband and I truly felt that God gave us the gift of our son and it was our responsibility to give him the best chance at a long and full life. There was no question in our minds: we would do the 3-stage surgeries. We researched ALL of the hospitals across the entire country, and honestly, we found the best for us to be right in our backyard (okay, only a 3 hour drive to MUSC in Charleston, SC, but you get the point).

We made the right call.

Our son was born in October 2009 at MUSC. Immediately after he was born, he was taken to a stabilization room where they started IVs in is umbilical cord and assessed his APGAR score, etc. Honestly, I didn't get to see him until about 2 hours after he was born. They brought him in to my room and I got to hold him for about 10 minutes, then they took him to the Pediatric Cardiac ICU (PCICU). While he was there, I was able to sit by his side, hold his hand, etc., but couldn't hold him until the night before his 1st surgery when he was 7 days old. I held him for about 3 hours that night -- it was awesome!!! I continued pumping for the 5 weeks he was in the hospital, and he was only given my breastmilk through his ng-tube, not formula. There were Occupational Therapists (OT) who worked with Chase's mouth daily to help him with sucking and using his muscles to be able to eat. He did GREAT taking a bottle the first time, had no aversion to bottles or breastfeeding, and we went home with a gorgeous, thriving, healthy (minus his sweet, special heart, of course) baby boy!

When Chase was 4 1/2 months old, he had his 2nd surgery, the bi-directional Glenn. We were in and out of the hospital in SEVEN DAYS. Chase is a beautiful baby boy and if you couldn't see the scar on his chest, you would have NEVER known there was ANYTHING "wrong" with him!

As far as push back with the NICU, all I can suggest is that you meet with someone from the NICU before delivery (which you would meet with a cardiologist at the very least already anyway). You can ask all of your questions and find out the "protocol" before your little one is born. I doubt they'll allow you to breastfeed before his 1st surgery, and you probably won't be able to hold him since as soon as he's born, they will put a UAC and UVC (lines in his umbilical cord that go near his heart, so moving him around a lot isn't advisable). He will also receive a medication called prostaglandin to keep his patent ductus arteriosus (PDA) open until his surgery.

As parents, it was our responsibility to be our son's advocate during his stays at the hospital. Sure, they have policies and procedures, but there's no reason we can't ask WHY or WHY NOT and make specific requests on behalf of our son. The surgeons, cardiologists and nurses we dealt with were A-MAZING and very understanding. They all appreciated that we asked questions and occasionally questioned "the system" they use day in and day out.

This is a difficult decision for sure, but I'll share with you the best advice we received on our journey from a fellow heart mom: "It isn't easy, but it IS doable." Please give this decision a lot of thought and do your research! Our son is the greatest miracle and biggest blessing in our lives, and we are so lucky to love him every day!

PLEASE consider visiting my blog and reading through our journey. The address is http://mom2lo.blogspot.com. Chase's first surgery was Nov. 2, 2009 and his second was Mar. 3, 2010 (so you can look through the archives). He will be ONE on the 26th of this month and you'll see LOTS of pictures of him on my blog. He's gorgeous and I've never ONCE regretted our decision. It was the ONLY one for us.

Please feel free to contact me if you'd like to talk further or ask any specific questions. The community of heart moms is a very STRONG one and we are ALWAYS here to SUPPORT each other in EVERY way possible. My email is mom2lo (at) charter (dot) net.

God bless you and your sweet little boy!!!
Kathy

P.S. Sorry this is so crazy-long!

Oh, and here's a recent pic of my handsome little man!

[Lindsay1234]

Our heart baby is 17 months old now and she was diagnosed at 26wks in utero with Tof (similar to HLHS)

Dd2 was born and immedeately intubated and whisked away to the nicu (she was a "blue tet", born dark blue). Being a "hippie" mom, I expected to be resistant to a lot of modern medicine but when confronted with the actual situation, I gave her to the docs and said Do what you have to do to save her. They put her on TPN (IV food) right away and let me pump and give her bm, no hassle with that!

Our Birth/Follow up plan was inside her medical binder so we were constantly asked about everything on the list. I chose not to have her vaxed and they were ok with that, I chose not to have the hep b at birth and the cardio said I made the right decision!

In regards to the surgeries and quality of life, we didnt know if Sophia was going to live, in fact, she almost died 3 times and they brought her back and she has gone on to have 2 OHS (open heart surgeries, the 2 that HLHS babies have I believe) and is now referred to as a miracle baby for bouncing back from everything! She is the strongest kid I know and has made us a stronger, complete family. The OHS is hard, but she was out of the hospital in 6 days after the 2nd one! If her blood pressure had been normal, she could have left in THREE days!

Heres a link to some pics of our happy CHD survivor! Our older dd said the other day "I sometimes forget Sophia has heart surgeries!" because shes a little...toddler!!!! Just remember there IS hope for these heart babies!!!!!:heartbea t

ETA: Dd2 was tube fed for 10 weeks until we decided to have a permanent feeding tube put in her stomach. I wasnt allowed to hold her for the first 4 days because of the vent, I couldnt hold her for 2 wks after the first OHS because of her arterial lines and stitches (thats not how it always is). I couldnt cosleep when she came home because of temporary O2 monitors and feeding tube. I love her (and my older dd of course)more than anything and even though I couldnt BF her or even hold her, she knew exactly who I was. She is the loving, cuddliest girl ever. There was no lack of bonding, through everything we could always put our skin next to her skin. Your baby knows the love you are giving and what you are giving up to give them the best start. I have never, EVER seen a happier kid than dd. Not even my older dd! Sophia smiles from morning til night, she loves life, family, her cat, doctors and nurses!

Good luck!!!

[Lindsay1234]

Originally Posted by mom2lo

Oh, and here's a recent pic of my handsome little man!

OMG, so cute!!!!!!

[mom2lo]

Originally Posted by Lindsay1234

OMG, so cute!!!!!!

Thank you! I think so, too!!

[vbactivist]

Originally Posted by Lindsay1234

Our heart baby is 17 months old now and she was diagnosed at 26wks in utero with Tof (similar to HLHS)

Dd2 was born and immedeately intubated and whisked away to the nicu (she was a "blue tet", born dark blue). Being a "hippie" mom, I expected to be resistant to a lot of modern medicine but when confronted with the actual situation, I gave her to the docs and said Do what you have to do to save her. They put her on TPN (IV food) right away and let me pump and give her bm, no hassle with that!

Our Birth/Follow up plan was inside her medical binder so we were constantly asked about everything on the list. I chose not to have her vaxed and they were ok with that, I chose not to have the hep b at birth and the cardio said I made the right decision!

In regards to the surgeries and quality of life, we didnt know if Sophia was going to live, in fact, she almost died 3 times and they brought her back and she has gone on to have 2 OHS (open heart surgeries, the 2 that HLHS babies have I believe) and is now referred to as a miracle baby for bouncing back from everything! She is the strongest kid I know and has made us a stronger, complete family. The OHS is hard, but she was out of the hospital in 6 days after the 2nd one! If her blood pressure had been normal, she could have left in THREE days!

Heres a link to some pics of our happy CHD survivor! Our older dd said the other day "I sometimes forget Sophia has heart surgeries!" because shes a little...toddler!!!! Just remember there IS hope for these heart babies!!!!!:heartbea t

ETA: Dd2 was tube fed for 10 weeks until we decided to have a permanent feeding tube put in her stomach. I wasnt allowed to hold her for the first 4 days because of the vent, I couldnt hold her for 2 wks after the first OHS because of her arterial lines and stitches (thats not how it always is). I couldnt cosleep when she came home because of temporary O2 monitors and feeding tube. I love her (and my older dd of course)more than anything and even though I couldnt BF her or even hold her, she knew exactly who I was. She is the loving, cuddliest girl ever. There was no lack of bonding, through everything we could always put our skin next to her skin. Your baby knows the love you are giving and what you are giving up to give them the best start. I have never, EVER seen a happier kid than dd. Not even my older dd! Sophia smiles from morning til night, she loves life, family, her cat, doctors and nurses!

Good luck!!!

WHere did you get her bracelet?

[Lindsay1234]

http://www.chdfamilies.org/products.html

Here! It took about a month to get.

[skyebones]

I'm so sorry you have to experience this. My daugher has the opposite of your child's dx - HRHS. Sophia is 9. I appreciate how difficult this decision is for you - I struggled with the decision to proceed (or not) with surgery as well. Obviously we chose surgery, but I just wanted you to know that there are other Mother's out there just like you who had to make this decision and I will say a prayer for you tonight. I just felt strongly that you know that.

If you ever want to discuss this further, please feel free to email me: [e-mail]. I have lots of experience with 7 heart surgeries under my belt and also with pumping, NG feedings, multi medications, child care for special needs, etc.

Take care,
Laura

[vbactivist]

Originally Posted by Lindsay1234

http://www.chdfamilies.org/products.html

Here! It took about a month to get.

thanks - I just ordered one

[pimms]

My heart (no pun intended) goes out to you with your son's diagnosis. My son has Tetralogy of fallot (he's now 7), so a bit different in the approach b/c he was born a pink tet and didn't require surgery until he was 4mos old. He was in the NICU and those days were very difficult b/c he was also born with other issues that had to be sorted out. Hard to answer some of your specific questions b/c each need is so different post birth and each facility having different policies, etc. I do think you can push back or at least ask a lot of questions to get a better understanding of what is realistic.

I would like to direct you to a resource for parents of kids with heart defects, called Little Hearts. www.littlehearts.net was started by a woman whose son has HLHS and there is a huge support network in person and/or online and different options for communicating and gathering information. The network is wide enough you could potentially hook up with someone not only with your diagnosis but regional area/hospital/cardiologists and potential surgeon should you choose surgery.

I know you have a very hard and powerful decision to make, you are doing the best thing for your son by doing your research.

[HLHSmommy2Noah]

Okay I know this is a older post but I had to throw my two cents in for anybody else reading out there. My son Noah has HLHS and I was not diagnosed prenatally! I had a beautiful birth at a birth center on January 9 2011. He came out a little blue but nothing out of the ordinary. So I think its absolutely possible to have a great birth and not have to have him whisked away immediately! Of course in a hospital im sure they will. My mid-wife did notice his breathing was rapid and after a few hours it was not getting better. So we took him to the NICU and had to leave him in the hospital that night. The next morning the cardiologist called us in and that's when we found out the news. Luckily he was a very healthy strong boy. He had his first surgery the Norwood at 5 days old. Hes recovering great and is slowly learning the bottle and is getting all my milk I've been pumping for weeks. Unfortunately a couple days ago we found out he has NEC (a stomach infection) and is back on the ventilator. Its common with heart babies because of his shunt not alot of blood was going to his gut and it causes the tissue to die. Of course my little angel is also fighting through this and is doing great. I know its a long road ahead but I see him as the BIGGEST blessing in my life and I know he is here for a reason. I truly hope everything works out for you and your family. Its absolutely terrifying but you and your child come out a 1000x stronger then you ever thought you could be!!!!!  

[blessed.mommy]

I don't know anything about your son's heart condition, but I couldn't read and not post something. I am sorry that you, your little man and family have to go through this. Big hugs to you all.