SN FAQ: Heart Conditions — The Bump
Special Needs

SN FAQ: Heart Conditions

Welcome to the Special Needs Frequently Asked Question thread! Please feel free to also create your own post in a new thread if you need more information or support. If you do post your own thread, we want as many parents as possible in your similar situation to 'see' your question. Please be specific and include the potential diagnosis or procedure in your post title.

I just found out my child has a potential heart condition.

When did you find out about your child's heart condition?

What was the original diagnosis and what happened after you got it?

Did you get a second opinion?

Did you child have corrective procedures? What were they and at what age were they done?

What is the prognosis for your child? What kind of follow-up do you do?

Do you have any additional advice for parents learning their child has a heart condition?

WAY 2 Cool 4 School


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Re: SN FAQ: Heart Conditions


  • When did you find out about your child's heart condition?--- 3 weeks old 

    What was the original diagnosis and what happened after you got it?--PDA and right aortic arch attached incorrectly. Surgery next day

    Did you get a second opinion? -- no

    Did you child have corrective procedures? What were they and at what age were they done?-- yes we had the surgery next day, admitted the same day. 3 weeks old 

    What is the prognosis for your child? What kind of follow-up do you do?-- lots of follow ups since he was diagnosed with DiGeorge after surgery.  Immune compromised, hypoparathyroid, may or not have delays. 

    Do you have any additional advice for parents learning their child has a heart condition?  Just remember your their advocate. I had to voice my concerns, wishes, and anything I felt I needed to know. I wanted to stay informed and not be clueless

    Baby #1 MC November 2007
    Baby #2 MC June 2008
    Baby #3 Born April 2009
    Baby #4 due date February 2015

    Lilypie Kids Birthday tickers Lilypie Maternity tickers
  • image gremaud07:


    When did you find out about your child's heart condition?--- 30 weeks 5 days pregnant, about 2 hours before LO made his debut

    What was the original diagnosis and what happened after you got it?--W  has been diagnosed with Tetralogy of Fallot, right now the "plan" is to have surgery around 6 months

    Did you get a second opinion? -- no

    Did you child have corrective procedures? What were they and at what age were they done?-- He will have corrective surgery before 1 year

    What is the prognosis for your child? What kind of follow-up do you do?-- We will also have lots of follow up.  My little guys was also diagnosed with 22q11 deletion.  We still don't know much about symptoms that he has since he's so young (right now he's at gestational age 32 weeks).  (Gremaud07, I'm interested in how your LO is progressing - I know no one who really knows about this syndrome).

    Do you have any additional advice for parents learning their child has a heart condition?  Not much advice yet since our little guy is less than 2 weeks old, but I'm really interested to see what other moms say.  But, so far, the initial "blow" has been really hard, it's like we were punched in the gut and living in somewhat of a nightmare for the first few days. 

    a>[IMG]http://i53.tinypic.com/2n7ph8l.jpg[/IMG]a>
  • image Assembly_Reqd:

    Welcome to the Special Needs Frequently Asked Question thread! Please feel free to also create your own post in a new thread if you need more information or support. If you do post your own thread, we want as many parents as possible in your similar situation to 'see' your question. Please be specific and include the potential diagnosis or procedure in your post title.

    I just found out my child has a potential heart condition.

    When did you find out about your child's heart condition?

    I have heart problems so I had a fetal echo (with both girls).  P's was around 32 weeks or so and M's was in the 20's

    What was the original diagnosis and what happened after you got it?

    In the realm of heart problems, our diagnosis were very minor.  P had a VSD and PFO and M had a PFO. 

    Did you get a second opinion?

    No, I was offered a second fetal echo with M but she came early and we had much bigger things going on pre-delivery than the PFO.  

    Did you child have corrective procedures? What were they and at what age were they done?

    P's VSD closed on her own.  Her PFO is still open (no one has really said what we need to do, we go back to see cardio when she is 3, I believe).  M's PFO is closed. 

    What is the prognosis for your child? What kind of follow-up do you do?

    We did an initial early echo and EKG, and then followed up at 1 year old with P and again at 2 and we will at 3.  They didn't get a good echo last time because she was very much in "dr's freak me out and always hurt me mode," at that time. Echo's are a lot easier on smaller babies! 

    Do you have any additional advice for parents learning their child has a heart condition?

    Find a good pediatric cardiologist, and breathe!  Also, don't assume just because you have a small defect that you could have a genetic syndrome.  Lots of smaller defects are just that, and don't necessarily mean anything else is wrong with your LO.  Try to connect with another mom whose been there, looking for your childs dx and "blogspot" is a goodway to find a blog!

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • When did you find out about your child's heart condition? 3 Weeks

    What was the original diagnosis and what happened after you got it? On paper: A mal-aligned VSD with an overriding aorta, and the start of right ventricular hypertrophy, and a small ASD. He basically had tetrology of fallor without the pulmonary artery/valve issues, this is how the doctors explained it to us. 

    The major issue from this diagnosis is the back flow of blood to the lungs, which can cause lung damage, and heart failure. He was showing many of the "classic" symptoms associated with this defect, but was not showing signs of heart failure, so we were able to postpone surgery. He had to eat a high calorie formula, and gain weight, ideally they like to get babies to 11 pounds.  We were seen by either our pediatrician or cardiologist weekly, to keep an eye on his weight, and check for signs of heart failure.  We were hospitalized three total times.  The first when they diagnosed, the second and third for RSV and bronciolitis, to monitor because both cause stress to the lungs.

    Did you get a second opinion? No, we were seen by a team of about 10 doctors that all came to the same opinion.

    Did you child have corrective procedures? What were they and at what age were they done? He had his VSD repaired and they had to fix up his pulmonary valve a bit because it was getting stretched down due to the heavy blood flow.  He had surgery at 5 months, ASD closed on it's own. 

    What is the prognosis for your child? What kind of follow-up do you do? His surgery should be the only one he will need.  We are currently scheduled to follow up yearly, and will eventually be moved to every two years.  His prognosis is good, he will only be restriced from "rough" sports on the chest area like football and hockey. 

    Do you have any additional advice for parents learning their child has a heart condition? Seek out a support system, Mended Little Hearts, is a great organization and support system.  You will meet other families and children who have been through similar experiences, and they will be your greatest resource. 

     Take one day at a time, whether your child needs OHS or doesn't, if they need one or five surgeries, it's going to be a roller coaster ride.

    Birthday
  • So I don't get on this board a whole lot but see that your asking for updates. My DS is progressing well , we have had a few hiccups but working through them. He has had a speech delay and still recover therapy buy his sensory seeking has had more outbreaks than I the past but we are getting as much as possible. His heart is finally growing with him and cardiology says his doing amazing.
    Baby #1 MC November 2007
    Baby #2 MC June 2008
    Baby #3 Born April 2009
    Baby #4 due date February 2015

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    [Deleted User]
  • I know this was done a while back, but I wanted to add in mine since we have been through most of the process.

    When did you find out about your child's heart condition? We discovered during our 20 wk u/s (which was luckily performed late at 24 wks). We had a lvl 2 ultrasound because of family history of cleft palate. During that the tech noticed the heart condition. 

    What was the original diagnosis and what happened after you got it? He was immediately diagnosed with Tetralogy of Fallot. We then elected to have an amnio. The doctors did not encourage it, but I needed to do something and this was something. From the amnio we discovered he had Down Syndrome. During fetal echoes we discovered his VSD was very large but his PS was moderate so there shouldn't be any problems until birth.

    Did you get a second opinion? No. We had multiple fetal echocardiograms and it was very clear with a relatively simple fix. We also had a chance of hemophilia, which if positive at birth would have led us to seek out other hospitals and teams more experienced in hematology. It was negative so this wasn't needed. 

    Did you child have corrective procedures? What were they and at what age were they done? Yes, he had his full repair at 11 weeks. He was pink at birth and was able to go home at 3 weeks old. I was told his heart most likely wouldn't pose any problems before full repair at 6-8 months old. His VSD was very large so it was almost impossible for him to gain weight. He began turning blue frequently and full repair was performed as an emergency at 11 weeks. He did not qualify for a shunt, which is the typical course of treatment. They discovered an additional ASD but it was left open to help with pressure. It closed on it's own at about 8 months old. His surgery was valve-sparing, which is best case scenario.

    What is the prognosis for your child? What kind of follow-up do you do? We are now at appointments every 6 months. He has a high chance of needing valve replacements in his future, but that is a wait and see. He will get echoes for he rest of his life. 

    Do you have any additional advice for parents learning their child has a heart condition? Research, research, research. When you understand what's going on, it's so much easier. It's not a surprise when something typical for the condition happens. I also found some great support groups of moms with heart warriors. They taught me so much and supported me during the stressful times in the hospital. I highly recommend finding a support community who understands. 

  • When did you find out about your child's heart condition?  It was suspected at a routine anatomy scan at 21 weeks and confirmed through a level II a/s and fetal echo.

    What was the original diagnosis and what happened after you got it?  DS2 was diagnosed with hypoplastic left heart syndrome (HLHS) and double outlet right ventricle (DORV).  The level II a/s and fetal echo were both performed at a high risk OB practice (maternal fetal medicine or MFM).  They tracked me through the remainder of my pregnancy and I had monthly growth ultrasounds as well as fetal echos.

    Did you get a second opinion?  The diagnosis was suspected by my OB and confirmed by MFM and the pediatric cardiologist that read the fetal echo. This was all routine for confirmation.  

    Did you child have corrective procedures? What were they and at what age were they done?  After birth he was immediately taken to Children's Hospital (as planned), where he was monitored until his first open heart surgery, which he had at 5 days old.  His next surgery will be when he is five months and his last (hopefully) will be around 18 months to 2 years old.  There are two possible routes to take with this diagnosis - the Norwood/Glenn/Fontan surgeries or the Hybrid/Stage II/Fontan.  We chose the Hybrid.

    What is the prognosis for your child? What kind of follow-up do you do?  So far his outlook is good, but he didn't have any additional complications on top of the congenital heart defects (CHDs).  Between the first two surgeries he's closely monitored.  We weigh him and take his pulse ox daily and talk with a nurse weekly.  We also return to the Children's Hospital every other week for echos and EKGs and to meet with his cardiologist.  After his second surgery (currently scheduled for February 15) he won't need to be monitored as closely and the number of doctor's visits will decrease.

    Do you have any additional advice for parents learning their child has a heart condition?  My biggest piece of advice is to talk to people that are knowledgeable about the condition.  Not every hospital is capable of handling HLHS and therefore may give patients a grim diagnosis.  The survivability rate is improving rapidly for these babies.  We were fortunate that our local Children's Hospital is a leader in the field for these surgeries so we didn't need to travel far.  Do your research about the condition and don't make any hasty decisions when you're emotional.  

    Here's a great link about the top hospitals in the nation that deal with pediatric cardiology and heart surgery.  http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery  


    I also found this website helpful to give me general information as well as an idea of what to ask doctors and my insurance company. http://hlhsinfo.homestead.com/index.html 

     Daisypath Anniversary tickers


    First Son - born 2013
    Second Son - born 2014 - Hypoplastic Left Heart Syndrome (HLHS) and Double Outlet Right Ventricle (DORV).  First open heart surgery at 5 days old.  He's had 3 open heart surgeries and several other procedures and is currently doing amazing.
    Third Son - due June 9, 2018
  • Baby Avery's heart issue was first noticed at 38 weeks when we went in for a Nonstress test due to gestational diabetes. They decided to induce and at birth she was diagnosed with a bicuspid aortic valve. Plan was to monitor regularly with echocardiograms with potential need for a balloon valvuloplasty down the line. At 17 days, baby girl began breathing funny, not eating well, etc. and after eliminating other potential causes it was determined her heart needed help. They performed the balloon valvuloplasty at 23 days (today) and anticipate another will be needed down the line as well as valve replacement. We are waiting to see how effective the procedure was but will continue seeing the cardiologist regularly to monitor her heart's performance for life.
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