My granddaughter may need OHS again years down the road

[Debbrn]

Background: I have history of tetralogy of fallot, I am a nurse and I have had to fight to get the care I need. With all of this I know a lot about the evaluation and treatment of tetralogy of fallot.

Before my granddaughter was discharged from the hospital after birth her parents were told over the phone by the cardiologist that their newborn daughter had tetralogy of fallot and would need open heart surgery. After discharge they were able to see the doctor in person at a doctor's appointment for further evaluation and explanation. They were told again that she had tetralogy, but was told that her pulmonary valve was not involved. They were in fact given a piece of paper with the specific defects and the pulmonary valve problem was not involved. Being skeptical i had the parents ask the doctor at the next appointment specifically about the pulmonary valve and they were again told that it was fine. She had a repair at 6 months in which the pulmonary valve was not touched. The surgeon said it was not necessary. When the mom asked immediately after surgery if she would need another surgery the surgeon said "no". I was there. Low and behold the echo 3 months after surgery showed pulmonary valve leakage. She went for a follow-up this week at the age of 2 1/2. The mother was told that "the heart was enlarged and that she had a 50% chance of needing open heart surgery again as a teenager. The father was not there. The mother could not recall that they had ever said that she may need OHS again. The father thought that they had been told that at some point.

With all that being said, I do not think any other hospital of MD would have done anything different at this point. What I am mad about is when doc's tell parents to often that the pulmonary valve is fine when a child has tetralogy of fallot and they tell them that they should not need any more surgeries. The studies show that there is high enough percentage of patients that have tetralogy of fallot that need OHS surgery again that docs need to stop telling parents that there child is fixed.

Rant over.

Debbie

 

[scott.eitman]

No surgeon can see into the future. They can only make predictions based on what they are aware of. I would only guess that when asked if more surgery would be necessary, they answered based on the immediate future.

I also recommend getting multiple opinions. Not every dr is the same, just like not every plumber is the same. Not every dr is able to get their message across in a way that we fully understand what is being told to us. We are only able to tell people what we know and sometimes, we are only able to hear what we are willing to hear. At 34 years old, I had a surgeon hold up a mechanical valve and tell me she wanted to put that in me. I do not believe that I was able to listen to anything else after that announcement. Once at the CCF, a cardio told me I should have surgery without showing me a valve and I was able to listen.

What I have learned through Mended Little Hearts (www. mendedlittlehearts.org) is that many children need second surgeries. I would think that being connected to such a group, and there are others, would be helpful both in learning more about the condition and getting the emotional support needed.

Scott

 

[Duffey]

I'm sorry to read that your little granddaughter is facing an uncertain future in regards to her valve. Our 4 year old grandson, born with a diagnosed BAV, will need his aorta repaired before adulthood if it continues to grow at the same rate that it is now. I agree; I would rather know it now rather than find out later.

 

[carolinemc]

That is the thing about valves and predicting future surgeries, unpredictable. I was eight when I had repair on the Aortic Valve. Both my mother and I was told at the time that I would face another surgery in the future. I did over 20 years later, aortic valve replacement with St. Jude's aortic valve. I can in the future face another surgery. Medical science is not perfect in predicting the future. Good luck and hope your granddaughter is doing better now. Hugs for today.

 

[Debbrn]

Thank you for your replies.

I actually did not believe that docs when they said the valve was fine and there would not need to be further surgeries. The docs never qualified there answers that everything was fine now. Telling parents of a tetralogy of fallot patient that the pulmonary valve is fine and that further surgeries will not be necessary is like telling a patient with BAV that the aortic valve is fine and that surgery will not be necessary.

I would have loved for the parents to choice to take her another facility, but it was not my decision to make. I told them what I knew and they made their decision. I was the father's step-mother from the age of 12-14 until my husband (his father) died. I have been engrafted into the family. I am not the step-grandmother. I am simply grandmother. Because of the parents social situation growing up they have had to become very independent which I greatly admire. They have told the grandparents to keep our mouths shut unless our advice is asked for. If other concerns arise I plan on gently suggesting that they get a second opinion. When the appointment comes up next year I plan on suggesting questions for the mother to ask the doc.

I have had to fight to get appropriate care for myself for the past 30 years. I just hope that my granddaughter does not have to deal with the same thing. Having to fight for care has been worse than having the defect itself.

Debbie

 

[aliciavicki]

Hi Debbie, very interesting post (i know it was a few months ago now), but I totally agree - although my ToF repair was done 24-odd years ago, my parents were told the same thing. Fast forward 22 years post my first OHS, they were devastated when I told them that I needed a valve replacement. We've all come to terms with it now, but it was quite a shock initially.