My daughter aged 23 with DS and an AV canal defect (repaired at 9 months old) has now moved from cardiac child services into adult provision

my question is this - because of improvements in heart surgery our children with DS and heart defects are living longer (thank goodness) I have heard that children who have a congenital heart defect should continue to be seen by child cardiac consultants as adult cardiologists mainly deal with heart defects that have been caused by lifestyle. Does anyone have a view on this?

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  • my daughter is 18 years old she had to continue seeing a cardiac consultant because she had leukemia. She now no longer needs to see a cardiact consultant because AVSD was repaired with just a small leak and cleared of leukemia (mainly needed checking because of drugs used) it is worth checking if you still need to attend?

  • Cardiologists are pretty busy. I don't think you'll keep getting appointments if they're not necessary. My daughter with DS has no current cardiac problems but I have a 13-year-old son who does. Last time we saw the cardiologist, he commented that he would soon need to move to adult services because of his size. I had no idea, but apparently the ultrasounds etc. used for children are smaller etc. and apart from age it is also body size and development that affects who you see.

    It's not only children with DS with heart defects who are living longer. Other children with heart defects also are, so I would think that at least some adult cardiologists specialise in heart defects that have not been caused by lifestyle. (But 'caused by lifestyle' is in itself a variable concept and I fear it would be true to say that for many reasons many adults with DS are themselves overweight and less active than is ideal.)

  • Thanks very much I appreciate your responses. Denjen my daughter same as yours AVSD with small leak which not causing any problems up until now. Nickenb thanks for your points (I didn't realise that the equipment ie ultrasounds were different).

  • Hi, we recommend that all adults with DS and CHD are seen by cardiologists at GUCH/ACHD - Grown Up Congenital Heart/Adult Congenital Heart clinics. They are often cardiologists that deal with children as well, and have the expertise of congenital defects that ordinary adult heart clinics may not. Even though your young adult have have had the all clear when younger it is a good idea to have them monitored by such a clinic, this often requires a visit every 2 yrs. Changes can still occur and it puts your mind at rest to know they are being checked out regularly.

  • When my daughter reached 18 she was transferred to a clinic that deals specifically with congenital heart defects. I am told that if she should ever need cardiac attention she should be transferred to the hospital where the clinic is based so as to receive the proper care( they have their own "on call" cardiologists)

    I was told also that cardiac care for children with congential heart defects vs care for adults is quite different !

    ( not sure in what way ... Didn't ask )

  • My Daughter is about to turn 20 and was referred to an adult heart consultant from child at age 18.

    Ultimately child vs adult services is very much the same, the welfare of the patient is paramount. However, Consultants also have to stick to very clear guidelines laid out by law. Simply put, Consultants are treating adults not children, where parents found that they once had more say over medical treatment for their children, it can feel very different when treating their adult son/daughter.

    I have found certain things hard to come to terms with but at the end of the day it is not the fault of the medical profession and I have always been very happy with the care that is offered to my daughter.

    The emotional rollercoaster that goes along with having a son/daughter with DS is emense, I always felt that I had a security blanket within child services. Adult services is the same just as a parent I feel a little more exposed and feel that I have lost my security blanket through no fault of the medical services offered.

    Transition to adulthood is hard on everyone and every parent has to learn to let go and allow their children to shine and stand on their own two feet, our journey as parents with DS children just feels a little harder at times, especially where there are additional medical conditions to consider.