Broken Heart: my family’s journey with CDH

| February 4, 2013 | 5 Comments

Helenas first feeding

It was the first time we had truly planned to have a baby.  I was hoping for some sort of fairytale pregnancy.  My first two had their own troubles.  I have had gestational diabetes with all 3 babies, and hypertension with the first as well.  So this time around I felt I knew what to expect and what I was in for.

This time around it started well, moderate morning sickness that eased up nicely around 3 months.  We were all very happy for the new addition.  The trouble began with the first trimester screening, it came back with a 1 in 16 chance of baby having down syndrome.   We did go ahead with an amnio (after much back and forth) so we could prepare.  It came back negative for any abnormalities, we were ecstatic!  The only issue was we had to deal with a two vessel cord (instead of three), which could effect growth and is a redflag for heart or kidney issues.  We were high risk because of the diabetes, so we were closely monitored.  Nearing 34 weeks my blood pressure would spike and there were signs of pre-eclampsia.   As well her growth had slowed around 32-33 weeks decision to move the c-section to 37 week was made.

The delivery its self went very well.  Baby had passed muconium, but luckily, hadn’t aspirated it yet.  On top of a two vessel cord she had a short cord- which could have made natural delivery difficult.  It seems the delivery was perfectly timed and there was a sigh of relief.  We were discharged early as we were both doing great.  Life was good!  Me and my husband were ecstatic.  We had a beautiful baby to add to our two other excellent children.  It had all been all worth it, it seems we stressed over nothing. Still something wasn’t right my mommy spidey sense were going off, I pushed it aside as everything really seemed fine.

I had breastfed my previous two children until  I got pregnant with the next.  My son actually self weaned when I conceived. At the time,  I had no idea why he wanted mama milk, but then would refuse when offered.  Once we got a positive pregnancy test it became clear- my milk changed somehow and he knew it and wasn’t happy.  I regress, the point was I am an experienced breastfeeder- or so I thought.  I never had any nursing challenges so I knew something was up when Helena wasn’t gaining weight well.  We checked for a tongue-tie, we pumped and feed and nursed and repeat. nothing was helping.  Weight her before and after feed, then getting a weekly weight- we bought a baby scale so I didn’t have to haul her into the office every week. I became so discouraged, but she was gaining the minimum so I was told not to be overly concerned.  Again I knew in my gut something wasn’t right.  Both my previous babies had doubled birth weight in no time, and were chubby little ones.

We went for Helena’s two month visit in November and our doctor looked at me and said “Have we ever heard a murmur here before?”  I said “no?”.  She had heard a loud murmur and seemed concerned.  We went home and waited for the cardiologist to call.  She wanted Helena to be checked quickly so went through the Ottawa Cardiovascular Clinic instead of CHEO- which could have longer waits for new patients.  We had an appointment two weeks later. In my research I found that murmurs were common and often meant nothing.  Small heart sometimes have extra sounds.  Logically I was not overly worried.  My gut on the other hand kept connecting the weight gain and the murmur.  My husband and I would talk and “reassure” our selves this was nothing to worry about.  But i was so anxious to find out what was going on.

We got the diagnosis at the first appointment in December.  We arrived at the clinic and they gave her an ECG test- which she hated.  Then the cardiologist said she suspected a hole in the heart and wanted to do an echocardiogram that day.  So we did and there it was-a large hole between the two bottom chambers of her little heart. Her defect is a Perimembranous Ventricular Septal Defect, VSd are the most common heart defect.  Most small ones will  grow in by the age of two and not cause and problems.  Unfortunately that’s not what happen in our case.  Helenas’ defect requires surgery, and medication in the mean time.  She has since gone for another ECHO, a few ECGs and a sedated ECHO.  All confirming the need for surgery which is scheduled for February 7th.  This year will give new meaning to valentines day for us, Helena will be getting out of the hospital around that time.

It was bitter sweet news, knowing I was doing my best as a mom, and my gut was right all along. I was also devastated that she would need surgery.   I am still in shock over the whole thing,  don’t think it has totally sunk in yet three months later and a week away from the surgery.  I am normally a very emotional person, but I haven’t been able to cry since I found out. So I am a mama bear and can break down for my kids, or I am still in shock and kind of numb.  That’s how I feel kind of numb, and maybe I am staying strong for my other kids.  I know nothing I did caused this to happen.  I have also connected with many wonderful mothers for all over the world who have babies who have been through much worse and have rare heart defects.  In all of it, I have learned that children are wonderful, resilient miracles.  They smiling through it all and recovering so quickly with love from their families.  I also have learned that there is a great sense of community in the moms of Ottawa (thanks attachment and baby wearing moms <3 you)  who have stepped up to help my family with prayer, support and meals while we are back and forth to CHEO the week after the 7th.

My next couple entries will be on other topics, I will do part two of our CHD journey soon!



By Andria Bell. I am in my 30’s. I have 3 beautiful children.  .Our oldest, Katie, just turned 5 and is in Senior kindergarten.  My angel, I was a single mom with her, as her father left us when I was 4 months pregnant. I met my husband when she was 18 months, so to all of us, he is her dad.  Next, our son, Logan is 2.5. He is an entertaining,  curious little guy.  Sometimes too smart for his own good. Our third little munchkin Helena. Her pregnancy was complicated, and her short life has been as well, so far.   She is 4 months now and will be needing open heart surgery within the next few months, for a Heart defect. I have a wonderful supportive husband, who is a Chiropractor here in Ottawa.  together we use an attachment /  natural parenting style (I guess that would be the best label to use) which includes breastfeeding, bedsharing and babywearing. I hope to share some of ur experience in all these areas!









Category: Family, Wellness

About the Author ()

Guest blogger!

Comments (5)

Trackback URL | Comments RSS Feed

  1. Katina Michelis says:

    Good luck! Courage to you and your family.

  2. K says:

    I hope the surgery went well. Thinking about you and your little girl.

  3. 1 Lucky Mom says:

    Praying for you and your family. Hope everything went well and that she will be home soon.

  4. @Mommy_Jennof3 says:

    My heart, thoughts and prayers are with you! There is nothing worse then a sick baby! I pray for a quick recovery! *HUGS You are one strong MAMA bear!

  5. kathy downey says:

    I hope you family is in good health and much happiness as i write this

Thank you for commenting! Your comment is moderated before being published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: