Heart mum

Hi I’m new to this so starting by saying hi and telling you all abit about my current situation. I am the mum to an 8 month old gorgeous girl who was born with severe pulmonary stenosis of the right valve and two holes in the heart.

Catherisation to open the valve failed and my baby underwent emergency open heart surgery at 3 weeks old. The surgery was successful although now as a side effect the valve is now leaking. This is beating closely monitored as will need fixing in the very near future. The two holes that she had were not closed at the time as she was too poorly but seem to starting to close themselves.

Zareenah has numerous ongoing issues with feeding, weight gain, breathlessness, sleeping that are textbook symptoms for cardiac babies so I have joined this platform in an effort to connect with other parents in similar situations or people who have been there and can offer support and guidance as we are still new to this journey.

[chubby2x22]

Good morning cookie, you have a lot on your plate to deal with. Good luck for the future and keep posting maybe someone will come along with advice. Jane

[Hidden in reply to chubby2x22]

Thank you so much Jane your message means a lot cx

[Rose54]

Thinking of you and your family

sending you best wishes and love

xxx

[Hidden in reply to Rose54]

Thank you xx

[Snowdrops_17]

Welcome to this forum Cookie! I had 4 children, all healthy and well. But my heart goes out to you for your sweet baby girl. I pray you have family and friends who support you in this difficult situation. Really pray that your baby gets stronger and is able to have her valve operation soon. Lots of love 💜

[Hidden in reply to Snowdrops_17]

Thank you. Your message really means a lot xx

[MichaelJH Heart Star]

Hello and welcome to the forum! The daughter of some people I know had major heart problems (never discussed the details). It seemed very much maintenance mode for years but about three years ago she had open heart surgery. These days she is just a normal ten year old. Hopefully you will have less years of stress but do update everyone here. Good luck you are doing just great!

[Hidden in reply to MichaelJH]

Thank you Michael it’s reassuring to hear of children doing well later on in life I guess we just have to ride the storm for now.

[Nathan53]

Hello Cookie - I am not a parent so can only imagine how difficult it must be for you. I vividly recall how I felt when a long time back (38 years ago) my niece was diagnosed when a few weeks old with a congenital condition called Tetralogy of fallot. In the lead up to diagnose she failed to thrive, frequently became breathless and 'blue' and didn't feed properly. Well to cut to the chase she had an operation to correct the problem when she was a few months old. The operation was a total success and my niece has no obvious heart related issues and no longer takes any medication. Looking back it was amazing to recall how smoothly the procedure went. Techniques and drugs have greatly improved since then and I hope Zareenah makes good progress in time. All good wishes to you all

[Nathan53]

Have just noticed the attached organisation which gives contact details of support organisations contact.org.uk/advice-and-s...

[Hidden in reply to Nathan53]

Thank you Nathan will look into this xx

[Milkfairy Heart Star]

Hi Cookie 116

You may find these links helpful. They will put you in touch with other parents with babies and children who have been born with structural heart problems.

chfed.org.uk/

tinytickers.org/

Good luck!

[Hidden in reply to Milkfairy]

Thank you so much xx

[Janma123]

Best wishes to you and your baby daughter, I hope everything goes well for you. Modern surgery and medicine is amazing.

[Lyndaloo494]

Hi, I know you posted this a few months ago but I just wanted to let you know I had a pulmonary stenosis and open heart surgery age 4 years old. I am now aged 47 and had a fit and healthy life and never looked back. Recently I've found the pulmonary valve is leaking and now need surgery. When I think back to how my mum must have felt it must have been very scary. But I only have happy memories of going for annual check ups as a child and being made a fuss off. I hope your wee girl will be the same x

[Hidden in reply to Lyndaloo494]

Hi, thank you for your message. So nice to hear a positive reassuring story from someone with the same condition as Zareenah. How is the leaking valve affecting you daily if at all? Zareenahs has been leaking pretty much as soon as it was opened after surgery and although she is stable now they don’t think she will tolerate it more then a few years. I can’t wait until we get to an annual check up stage at the moment it is still monthly. X

[Lyndaloo494 in reply to Hidden]

I finished my annual check ups at age 15, as they didn't see need to transfer to adult hospital. These days that would never happen and they'd continue to see through adulthood. Then just last year I had an echo scan to do with an unrelated thing and they found the leak. They say the valve has been likely leaking for a few years and enlarged the heart. I had and still have no symptoms at all. So hopefully your daughter gets all this sorted and has a great quality of life like I've had x

[Sillyfroggy]

Hi Cookie,

No advice, just wanted to say hi, and your baby’s name is beautiful - does it have a meaning?

I’ve only had my own experience to go on, but from what I see, these cardiologists are bloody amazing! Good luck to you and your family xx

[Hidden in reply to Sillyfroggy]

Hi, thank your for your message.

Yes her name is a Muslim name and means ‘companion of the prophet’ my older daughter is called Zaara and we thought the names had a nice ring together.

Yes the cardiologists and all the cardiac nurses and dieticians are amazing. They make this journey a little more bearable.

[sashaKaur]

Hi there I am going through similar hope your baby is ok

[Hidden in reply to sashaKaur]

Hi, thank you for your message.

If you don’t mind me asking do you have a child going through similar or yourself? Any questions that I may be able to answer for you plz ask away xx