My baby boy born with congenital heart block

During our 22 week check up to see if my baby was a boy or girl the doctor walked in with the worst news anybody could ever have given me my son had congenital heart block. Another shock he laid on me was the reason he had congenital heart block is because I have lupus. My life was changed instantly. The first 24 hours I cried my eyes out, but then I realized I have to be strong and not put added stress on the baby. The rest of the pregnancy I was on steroids and plaquenil ( lupus medicine), I was at the doctor 3 times a week for ultrasounds, and going to philadelphia every week which is about 2 hours from where I live. It was a long pregnancy, my son was born August 3, 2012 5 weeks premature soon after birth he had a pacemaker put in at the Children's hospital of Philadelphia, he was in the hospital for 2 months. Today he is 7 months and such a happy baby, I still worry about his every move or when he is sleeping, Normal parents do that but when you have a child with a medical problem it makes it so much worse. It was hard to find anyone knowing what I went through because my condition is so rare the doctors said most patients with lupus don't pass antibodies through the placenta to the baby, but I did. I am so glad I found this site now because It is a daily struggle and I enjoy talking with people that know what I am going through.

6 Comments

Well Mom

by Grateful Heart - 2013-03-11 01:03:46

It sounds like you did everything right and did a great job in nuturing your baby before and after he was born. You did a great job!

Glad to hear he is a happy baby, it is amazing how resilient children are.

Congratulations on your little miracle....you have some story to tell him someday.

Grateful Heart

You are not alone

by japresler - 2013-03-11 03:03:57

I just posted about my granddaughter - now 8 and 1/2, who was paced at 3 days old. The worry, fear, and even guilt your feel are normal for your situation. The name of your daughter's disease in Neo-Natal Lupus and my granddaughter's mother had the same anti-body you passed on to your child, but her's was related to Rheumatoid Arthritis - which she now has but did not have during or before the pregnancy. The first two years were hardest on her - but they get easier, you'll see. My granddaughter has few restrictions other than no contact sports - which she is not interested in anyway. If you would like contact you can e-mail me at japresler@aol.com and I could get you in touch with my daughter.

lupus

by Shell - 2013-03-11 07:03:53

Hi. I also was born with congenital heart block (in 1971) They discovered it when I was 6 months old but I didn't get a pacemaker till 7 years ago when my heart rate was continually below 40. When I was 11 my mother was diagnosed with lupus but it wasn't for a few more years that the doctors discovered that my heart issues were caused by it. Growing up my parents were worried (that's normal) but they didn't stop me from doing anything. I danced when I was little, played ball, was a cheerleader in high school. I'm married with 2 sons (15 and 12) I did have my kids before my pm but the doctors didn't even consider me high risk. (I also was born 4 weeks premie. Don't know if the lupus has anything to do with it) I have an older sister and she has no medical issues. It's just the luck of the draw.

living with CCHB

by Tracey_E - 2013-03-11 10:03:00

I don't think CCHB is the worst thing ever! Far from it, actually. Obviously, I'd rather have a heart that beats like everyone else but if we have to have a problem, this one has one of the easiest fixes.

I'm sorry your son got off to such a rough start! Worrying about him is perfectly normal. Something to keep in mind- this is MUCH harder on the parents than the kids. We don't know any different, it's normal to us. Kids don't think like adults, we don't worry about the future, we don't stress. My parents never treated me different than the other kids, they always stressed what I could do, not what I couldn't. Kids will follow your lead. Never let your son see your worry if you can help it. I never truly understood what my parents must have gone through until I was a parent myself. I have so much respect for them, they were amazing.

Was my childhood perfect? Well, no, but no one's is when you think about it. I grew up healthy, active, well rounded and I really think dealing with heart things all my life has made me tougher. It takes a lot to rile me up.

There's no reason to think your son won't live a full and normal life. I'm 46 now. Like Shell, I made it to adulthood without the pm because when I was a child they didnt give them to kids unless it was critical so I got by without. I've been paced for almost 20 years now. I have two teenagers, both born with the pm. I own a business, am a Girl Scout leader, band mom, active in my church and a dog rescue. I do Crossfit 5 mornings a week, love to kayak and rollerblade. We hike or ski most vacations. In other words, I don't sit around much! I feel great, am healthy and active. Your son will have a bright future ahead of him, also.

Hi Abankos

by Moner - 2013-03-11 12:03:07

Welcome to the club here the people are warm and kind.

I hope TraceyE weighs in here, if I recall she too was born with a congenital heart block, but nothing stops her, she is more active than folks without pacemakers.

I'm sure you will be receiving a lot of replys from people sharing their stories and congratulations on your new baby boy.

Glad to hear you found this site.

>^..^<

Congenital heart block and Lupus

by essjay - 2015-04-24 03:04:30

Hello,
I have just joined this site. I hope that I can reassure a lot of people who have posted their concerns. In 1981, 33 years ago, I gave birth to a beautiful baby girl. During the routine post birth checkup immediately following her birth, the doctors discovered that my baby had a very low heart rate. In fact, it was only 37 bpm. This had not been detected during my regular pregnancy checkups. My baby was flown by helicopter to Sick Children's hospital in Toronto, where she underwent several tests. Long story short, she was diagnosed with complete heart block and at 5 days old a pacemaker was implanted in her little body. At the time, we were told that it was a fluke of nature. Two years later, after doing a great deal of private research, I found a mother in another area of Canada, who had two daughters, both with underlying heart rates of 37, and both with pacemakers. The mother had Scleroderma, an autoimmune disease. Years before giving birth, I had been diagnosed with Scleroderma, but seemed to be asymptotic. After hearing about this mother's two children and her own disease, I informed my daughter's doctors. They suggested I get tested for Scleroderma and another autoimmune disease, Lupus. The results showed that I have Lupus antibodies, but am completely free of any symptoms. Further research has shown that a large percentage of mothers who give birth to chb babies, have Lupus or Lupus antibodies, but not all mothers who have Lupus will give birth to chb babies. I am now 65 and in perfect health. My daughter is almost 34, very healthy, does a variety of sports, she is very smart and expected to live a long, healthy life. She has had about 4 battery replacements, and one or two simultaneous lead replacements. Her pacemaker is and always has been full demand and generally last 9 or 10 years.
The leads are not normally replaced just because the battery pack is replaced. We believe that my daughter was the youngest baby to receive a pacemaker at that time. Now, chb is nearly always diagnosed before birth, because fetal monitors and other tests are so much more advanced than they were in 1981. I also have a son, who was born three years prior to my daughter. He has a normal heart rate.
My daughter has no signs of Lupus.

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