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batsilvermoon 01-22-2013 12:54 PM

Anyone have a child with congenital heart disease?
 
My 4 year old son was born at 36 weeks with transposition of the great vessels....after 7 weeks in the cicu at chop and now 3 open heart surgeries later he is a strong sweet boy living with one ventricle....

mekat 01-22-2013 04:48 PM

Re: Anyone have a child with congenital heart disease?
 
Yes, but we are lucky ds's heart isn't bad enough to need surgery. VSD closed on it's own. ASD shrunk to 1mm with no signs of congestive heart failure. His heart is twisted out of place. This abnormality doesn't affect function but does cause problems during testing. He also has a mild form of 2nd degree heart block. Once again we are fortunate he doesn't need drugs or a pacemaker to maintain sufficient heart function. Basically to sum it up a good portion of his heart is abnormal but functions quite well.

So sorry your little one had to go through open heart surgery. Surgery with little ones is no fun my son's first was double abdominal surgery at 28 days old and we are currently gearing up for another in the next few weeks. DS has two genetic syndromes so he has a lot of stuff going on.

7 for now 01-22-2013 11:05 PM

I was born with a congenital heart defect. It worsened as I got older and I had open heart surgery at 30 years old. I had my aortic valve replaced with a human valve. I also had an aneurysm on my ascending aorta from the defect and had it grafted at the same time. I will have to have another valve replacement in the next few years. The human valves only last 10-15 years. I have had mine 8 years now. I will get a mechanical one next one since we will be done having kids by then and I don't want to ever have that surgery again.

Sent from my iPhone using DS Forum

batsilvermoon 01-23-2013 02:08 PM

Re: Anyone have a child with congenital heart disease?
 
my son was born at chop( childrens hospital of philidelphia) thankfully they found his condition during our 20 week ultrasound... it has been a hard road but one I would not think twice to go down again his life expectancy may not be the best but im greatfull for each morning I wake up and see his smiling face.... not many people understand what we have gone through and I wish there were some others out thier to talk to.... his condition is rare

UnderTheStars 01-23-2013 10:38 PM

My son was born with heart abnormalities. He has a right aortic arch which actually created a vascular ring that was closing off his esophagus and airway when he was born. He also had a diverticulum (pouch, basically) on his aorta that was putting pressure on it and surrounding organs. Both of those things he had surgically repaired (at 2mos and 15mos respectively).

He also has a small VSD, as well as a bicuspid aortic valve. Its likely his VSD will never be a problem but given his unique anatomy they are keeping an eye on the BAV and making sure it isn't creating a stress on his already-wonky aorta.

Do you belong to a Mended Little Hearts organization? I'm on my phone or I'd link you...they might be a good source for support or even have a group nearby. Otherwise my PM box is always open if you want to chat/vent/discuss anything...its hard being a mom of a CHD baby. :hugs:

zaeaton 01-30-2013 06:47 PM

Re: Anyone have a child with congenital heart disease?
 
Yes, My son who is 4 months old was born with VSD (tiny- won't need repair), PDA, and coarctation. He spent 1 month in the hospital after birth (3 hours away, ughh...) but hasn't had surgery yet. Looking to do surgery sometime between 6 months- 1 year. It will take place at Miami Childrens Hospital. I wish we could just get it done now- I don't like it looming over our heads! He's on lasix to help his breathing.

zaeaton 01-30-2013 07:21 PM

Re: Anyone have a child with congenital heart disease?
 
Sorry I was trying to type quick as my toddler was screaming. I'm happy to meet other CHD moms! Other than in the hospital, I haven't met any. I don't think there are any support groups near me. sad. So far my 4 month old has been eating well, thank goodness! But that is something the Dr.'s are monitoring and I'm (fearfully) concerned about. My older son, 5, has aspergers and severe sensory eating issues and I just honestly get scared thinking about dealing with another child who won't eat. It's so stressfull

batsilvermoon 01-31-2013 07:35 AM

Re: Anyone have a child with congenital heart disease?
 
I can say its been a long hard road with many ups and downs twists and turns... Jaxon has transposition of the great vessels as his main diagnosis but 4 other heart abnormalities as well... at this point ( after 1 st open heart surgery at 10 days then another at 6 months and recent one at 4 yrs old) he is done.. living with only one ventricle... and possibility of transplant in his future... looking back over the past 4 years (sighs) when he was born at chop i had to leave him and come home to take care of my other children it was the hardest thing I ever had to do... only being able to visit him every few days... he spent his first 7 weeks there.. we had feeding issues and weight gain issues and his lil heart would give out from time to time.. I remember watching other moms who could hold there babies while I could only hold jaxons hand...I longed to nurse him instead of pump ... I held him for the first time the day of his first surgery at 10 days old and only for a brief moment, then handed him over not knowing if id ever hold him again....he came out of surgery and I again was unable to do no more than touch his tiny hand.. weeks went buy calls in the middle of the night saying jaxon flat lined but hes stable now were oh to often... and as I visited and grew to know other families there and watching them hold there babies and take them home days went on and on... I remember being jelouse that jaxon couldnt have the switch operation and be "normal" like most the other babies... Due to how deformed and his other conditions he needed the fontane repair which allows him to live with one ventricle.... limits him a little and life expectancy is late teens to 20s... I take these numbers to heart but yet I look back and know I made the right choice and any time with this amazing child was worth all we have been through and all we will go through... We were at chop yesterday for a check up and all is well drs are amazed at how well hes doing and how well his heart took to the surgery.. he is no longer blue in color and his o2 stats are no longer 70 now they are 92 :) When I get a chance I will upload pics of all 3 surgeries and his progress if anything mommas know thier is hope and dont give up I know its frustrating... never once did I ask why him why our family I just asked ok.. what do we need to do for jaxon! I prayed to the gods to have mercy on him and give us the strength to handle all that comes our way.... jaxon is my hero he taught my family many things... and he continues to touch the hearts of all who meet him... have hope and faith if not in a god in your childs will to live.... also a tip.. if your newborn or infant must go through a long hospital stay for what ever reason use a lovey keep it in yur shirt for a few days.. and then with baby at the hospital they truly will know your scent then...jaxon would look at me like just another stranger for a while but when I was able to bring him home and nurse him we bonded quickly .. his nic name now is lover boy ;)

EmilyA874 02-01-2013 01:19 PM

Re: Anyone have a child with congenital heart disease?
 
Nice to "meet" other heart mamas on here! My DS has Tetralogy of Fallot (TOF), he is 3 weeks old today so we are really just starting on this journey. We are lucky in that he is a "pink tet" and we got to bring him home not too long after he was born. He will have his "repair" surgery between 3 and 5 months old most likely. He is doing really well so far and not on any medications yet, though we were told to expect him needing to be started on lasix by our next cardiology appointment on the 13th.
zaeaton, we don't have any support groups near us either. If you are on facebook there is a really great group of moms of CHD babies/kids, it's called "Heart Mamas" if anyone would like a link you can PM me for it (not sure if I am allowed to post it?). It's really helpful to have people who have been through/are going through this to talk to.

kushie tushie 02-01-2013 01:28 PM

Quote:

Originally Posted by batsilvermoon (Post 16191226)
My 4 year old son was born at 36 weeks with transposition of the great vessels....after 7 weeks in the cicu at chop and now 3 open heart surgeries later he is a strong sweet boy living with one ventricle....

:hugs: glad your LO is doing well!
I don't have a child with congenital heart disease but hsve lupus there have a high chance of have a child with that condition. My pregnancies are super monitored to try and catch it in utero.

I'm mobile.... sorry for the typos!


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