Single Ventricle Heart Defect and Treatment Explained - DILV

What is a single ventricle congenital heart defect and how is it treated? Parents of a newborn with a heart defect called Double-Inlet Left Ventricle (DILV) use simple illustrations to explain what this particular single ventricle defect is, how it affects the child's health, and what the surgical treatment will look like.
Parents John and Megan Filson talk about the emotional impact of their baby's heart condition and the complex surgeries required to address it.
The CDC estimates nearly one percent of babies born in the United States are affected by some form of congenital heart defect. Some common defects include: holes between the heart's chambers (ventricular and atrial septal defects, Tetraology of Fallot), misplaced, blocked, or malfunctioning arteries or valves (transposition, stenosis, Truncus Arteriosus, PDA, Ebstein's Anomaly), and single ventricle (Hypoplastic Left Heart, Double-Inlet Left Ventricle (DILV), Double-Outlet Right Ventricle (DORV))
Babies born with a single ventricle heart defect face the life-threatening problem of not getting enough blood flow to their lungs, or getting too much blood flow that causes fatal damage to the lungs. They also face the problem of not getting enough oxygen to their body.
A Partial Norwood, or Damus-Kaye-Stansel procedure, attaches the pulmonary artery to the aorta and uses a synthetic shunt to pass blood from the aorta to the lungs.
The two-stage Fontan operation connects the baby's vena cava to the pulmonary arteries in order to bypass the heart and prevent oxygenated blood from getting mixed with de-oxygenated blood.
The first stage is called the Hemi Fontan or the Glenn Procedure, performed when the baby is about 6 months old. It connects the superior vena cava directly to the pulmonary arteries.
The second stage is the Fontan Procedure, performed when the child is about three years old. It connects the inferior vena cava to the pulmonary arteries.
After these surgeries, single ventricle children can live a normal life. There will be strain placed on the liver, kidneys, lungs and heart that may require major interventions later in life.
Helpful resources:
Children's Hospital Los Angeles:
www.chla.congenital.org
American Heart Association:
www.heart.org - conditions - congenital defects
Mended Little Hearts:
/ mendedlittleheartsnati...

[@zainmulk9047]

For those who are anxious, just know, I am a single ventricle patient with DILV and just turned 20! Lived an incredible childhood, but with a lot of attention and care from both parents. Left to university last year and continuing the same course. Keep calm and have hope!

[@jfilson]

Thanks so much for mentioning this. It gives us a lot of hope for our boy. It’s the biggest thing in our life. We really appreciate it.

[@ramishbiachoo1392]

Thank you for sharing, my son also has double outlet right ventricle with hyperplastic left heart. Just mentioning your situation gives me and wife so much hope that our son will be alright. Thank you very much.

[@mathscity9756]

Thanks for mentioning this. My son have DILV too. And is just half years old. And i am too much concerned about him.

[@md.moshiurrahmanmoshiur3289]

Have you complete your surgery or not???

[@lauraryan6846]

I am 47 years old. I have DILV and cc-TGA (L-TGA).... I have a Bidirectional Glenn and Never had the Fontan. I am married (almost 23 years) and have 2 Children ages 25 and 17. Thank you so much for post this, CHD needs more awareness, and this is Right on....

[@lacieholm733]

Hi..!! Im 32 years old and i have TGA, DILV, and pulmonary stenosis i had a blalock shunt put in when i was 3 months old and open heart (fontan procedure) surgery when i was 5years old. I have had great reports every year when i go to my cardiologist. In the last 5 years i have been having to follow up with a hepatologist for my liver because they say we could possible develop cirrhosis of the liver. I went last week and got a good report. I know the journey won't be easy but times have changed since i was first diagnosed. Good luck and thank you for this video.

[@generic_white_male6261]

My son has exactly the same diagnosis, DILV TGA. His first year was pretty hard for all of us. He is now 5 years old and has a completely normal quality of life. His stamina is not any different than his healthy brothers. One day last year, he jogged more than a mile while I walked quickly. I wish you guys the best of luck!

[@quratulain5727]

Hey dear have you operated your son with surgeries??

[@generic_white_male6261]

​@@quratulain5727 My son is now 6 years old and will soon have his 4th open heart surgery to add a pacemaker. They discovered that his heart is only beating half as many times as it should when he is very active. He has no symptoms. His cardiologist told us that electrical problems are more common than not with these kinds of defects. Hopefully this will be his last open heart surgery for a few decades. He can run with his brothers, he is smarter than his brothers. We have not had any daily reminders of his condition. 1st open heart surgery when he was 3 days old to help adjust blood flow levels to the lungs to avoid damage. 2nd open heart surgery at 6months old to reroute half of the return blood. 3rd open heart surgery around 3 years old to reroute the other half of his blood. 4th open heart surgery planned this summer to add a pacemaker. no additional surgeries expected.

[@maribryson8726]

Our son has DILV with TGA, pulmonary stenosis, upstairs/ downstairs ventricles. This video is so thorough that I’ve sent it to others because I often get exhausted explaining his defect and surgical plan. He had a PA band and will undergo the Glenn in a few weeks. Thank you for sharing your journey. We hope Striver and family are doing well!

[@tymom9313]

My daughter is 3 weeks post fontan (she's 4yr old- glenn 3mon). I wish there were vids like this, explaining all diff types of cardiac defects! Thank you

[@jfilson]

mama ty thank you! So glad it was helpful. Yes definitely need more videos. We are so glad your daughter is doing well! I’m curious how you manage sternal precautions on a four year old? Maybe she’s old enough to understand how to manage? We’re wondering what it will be like after Striver’s Fontan.

[@tymom9313]

@@jfilson ipad! Lol but it saved us through preop, before & after surgery. After 6 weeks she has no restrictions, so that sounds scary as well. They found her cardiac defect at my 20 week ultrasound, so this surgery has been on the back of our minds for over 4 years! What a relief its done & she is healing wonderfully! Hope it's the same for you guys as well!

[@jfilson]

Wow thanks very much everyone! We appreciate your very supportive comments. We're glad this video is helpful. Josh, Lauren and Erin, we so happy to hear your stories, so similar to ours. It gives us hope and optimism to hear that there are great things further ahead down the road we're on. Thank you!

[@norman4274]

God bless your baby 👶

[@3boodking134]

I Have the single ventricle.. But I'm Happy thers no problem with this ❤️

[@raed1328]

May Allah Bless you and your family. Your blood is very thin (You are so easy to love ) بارك الله بك وبعائلتك. انت دمك خفيف

[@middler5]

Well done on the video! My daughter is approaching 3 and has the exact same defects. We've had the DKS and Glenn. We're currently waiting for her MRI and cath lab to determine if we can go ahead with the Fontan which would presumably be within a year. Best of luck!

[@jfilson]

Thank you dsmythy very much for commenting. I’m glad to hear your daughter is doing well, and we wish your family luck and success for the Fontan! Striver has had his DKS and Glenn. We’re not sure when they’ll recommend Fontan; maybe by weight/growth or age. But he’s doing well in the meantime. A little late with speech but we can tell he knows all the words so maybe he’s just the silent type! Blessings for your family.

[@waterjulie]

Meg so amazing to see this. What great parents he has. Sending you and your growing family our best wishes!

[@franciscaamponsahtodjroe8994]

Just lost my son few days ago doc says he has a two chambered heart instead of four. In Africa and think that's why it was not even diagnosed until I delivered. Mau his soul rest in peace

[@jfilson]

Francisca Todjroe I am so sad to hear this news. I know it is the worst experience anyone can have. I am very very sorry to hear this. 😔

[@dnyabiosiify]

Sorry for loss. Help me build, children hospital

[@ramishbiachoo1392]

Really sorry to hear about your son. May his soul rest in peace. I know he is in heaven looking down on you.

[@Belise000000]

You guys I love this! Can't wait to meet Striver and thanks for sharing your journey so openly. ❤️❤️❤️

[@tlash1934]

You two are amazing! The video is brilliant, and I have no doubt Striver chose his parents - smart boy! So excited for all three of you to continue your journey together.

[@Anna-pq5bq]

I have this too, I hope he is doing well now!

[@jfilson]

Specifically DILV? Wow very cool. May I ask how old you are? We’re always wondering how it will be when he’s older.

[@ramishbiachoo1392]

Thank you for sharing, John, my son also has a similar condition. He already did the pulmonary band, in a few months he should be doing his next surgery. Thanks again for your explanation and best wishes and prayers goes out to you, your wife and your son.

[@jfilson]

I hope the PA band is very successful, as well as his next surgery 🙏❤️

[@ramishbiachoo1392]

@@jfilson Thanks John. Yes, he is doing great. How's your son doing?

[@jfilson]

So glad to hear that. My son is 6 and doing great also. We’re very grateful.

[@ramishbiachoo1392]

I'm so happy to hear you son is doing great. Has he completed the Fontan?

[@jfilson]

Yes he had his Fontan at age 3. It was the hardest one emotionally because he’s older and aware of everything. But still not prepared for the trauma of surgery.

[@zarbabian]

My son have single atrium and single ventricle problem and also complete AV canal defect.is there any treatment for this???

[@manoharmurthy1127]

My son is having too cc-TGA, DORV. At 8 month's he had BT shunt, BDG at 4 yrs and now he done with fontan. Though he had all ventricles bcoz both great arteries are arising from right ventricle and not possible to route the left ventricle to aorta our surgeon decided to go for fontan instead of correction. Our surgeon told 20 to 40 yrs of good life depending upon case to case, aftewards transplantation is the only option. But he stil says 20 yrs is very long in medical field we can have new tech or solution for these kind of heart problems. He says keep hoping for best.

[@jfilson]

Thank you for sharing about your son ❤️ Yes, we are also hoping there may be breakthroughs in the next few years that can help our boy.

[@jfilson]

We wish many blessings and good life for your son and your family.

[@victoriad8433]

You two are amazing!!!

[@music.cloudhertz]

hi john, how is striver heart ♥ all surgeries done? I hope he's fine now

[@music.cloudhertz]

my baby boy will come to the world after 4 to 5 weeks and he suffer from single ventricle defect. my baby alex will be a fighter i know it

[@salahalghazali1623]

Congratulations

[@chandranighosh958]

How is Striver now ??

[@jfilson]

He’s doing well overall, thank you! About to turn 5.

[@md.moshiurrahmanmoshiur3289]

My baby born in single ventricle with dextrocardia , she is 2months now. What sholuld i do? Pls tell me how long she sirvive with this defects. ASAP.

[@jfilson]

@@md.moshiurrahmanmoshiur3289 I’m sorry for the worry that comes with her condition. I wouldn’t be able to know about her case. Has a doctor been able to make recommendations? I am sending love to her ❤️

[@Al90S]

الف مبروك

[@SatishKumar-bj4px]

Hello my son's problem single vantricle,what who is served his life nomal please give me suggestions

[@jfilson]

Our son needed a partial “Norwood” surgery a few days after he was born. Then he needed a “Glen” surgery at 6 months and a “Fontan” surgery at 3 yrs old. Also he needed a lot of medicines and careful monitoring during that time. We were fortunate to have these services available near us in Los Angeles. We send our best wishes for your son and your family. ❤️

[@emaanfatimavlogs]

My daughter 4 .5 years old she have univentricular hear tga ps

[@jfilson]

Thank you emaan fatima. I hope she is doing very well! Thank you for sharing this.

[@lg-st6cp]

My daughter has dorv mitral atresia and a severely hypoplastic ventricle she has pulmonary banding done at 2 wks her Glenn at 6 months with the dks procedure and having her fontan this October

[@jfilson]

ʝαlєχια кιиg we hope your daughter’s Fontan is successful and she can enjoy being a happy healthy kid!

[@benjaminmanuel4519]

@@jfilson hi bro.my son has also single ventricle. He had his glen shunt when he was 2 years old but he had not undergo for fontan procedure he is now 13yrs old. But he had 4 attacks already. Is fontan procedure possible for him now?

[@raginggost5412]

I have the sameproblem i already have 2 operations

[@janieguzman3816]

My baby had This same problem’ Right Ventricle didn’t develop

[@jfilson]

I hope she or he is doing ok?

[@honey1988cool]

My son is single ventricle please say what can i do for him treatment, because Dr. Says there is no proper treatment for him

[@jfilson]

Hi Himanshu, I'm sorry to hear about your son's heart condition. Do you know the name of his exact diagnosis? Also, where do you live?

[@lekevehcreations]

How is your little boy

[@jfilson]

He’s good. Just had his Fontan in April. He’s at 95% oxygen for the first time in his life and has opened a whole new world of possibilities. We’ve been sealed so tightly in a bubble during the pandemic and even before. He is happy so we are happy.

[@MaDiNaRobertovna]

❤️

[@Victor-it6bv]

How is your son doing today?

[@jfilson]

He is good. Had three surgeries and all were difficult, but he’s doing pretty well now. We are happy.

[@Victor-it6bv]

@@jfilson That's good to hear.🙏

[@Tom-db4xg]

🙏♥️

[@GurwinderSingh-vr4jq]

Hey brother..I've got the same situation like you were. Please contact me ASAP if you can?

[@jfilson]

What is your situation?

[@GurwinderSingh-vr4jq]

My will be nephew got the congenital heart defect with the hypo plastic right heart syndrome..is there any solution? What we do now should we continue or abort the baby???

[@jfilson]

I’m sorry for that scary situation. No one can tell you the right thing to do. In our case we are fortunate to have access to very good medical services, and Striver today is doing great. He is in between the Glenn and Fontan surgeries. He looks and acts like a normal healthy happy baby ❤️

[@GurwinderSingh-vr4jq]

Human In Sight..thank you for valuable suggestions. May God bless striver and live a healthy and joyful life. May God always be with him.

[@jfilson]

Gurwinder Singh thank you. I hope everything goes ok for your nephew and your family. Blessings to you.

[@iraqsniper6422]

😍😍😍😍😍😍