We've just been told that our little boy (currently 23wks pregnant) has an extremely sever heart defect. Heres what we know:
1) do nothing (also known as palliative care) I will give birth, our son will be made as comfortable as possible and will pass on his own within a week (max)
2) allow surgery almost immediately post birth - 60% rate of survival. With no further complications we would be discharged after 8 or so weeks. Any issues could result in a hospital stay of up to 4months. Once he is 6 months old, further surgery is required (same stats as first surgery) & then again around 3/4yrs old (same stats again). If its text book without any hiccups whatsoever there would be no further surgeries & absolute longest survival rate is 25-30yrs but no doubt we would outlive him
3) decide not to continue with the pregnancy
regardless of what we choose, we have to explain to his 5yr old sister that her brother is either going to die soon or be sick for a very long time (and then die anyway) we already went through a miscarriage which she is aware of and we just dont know what to do....... we are so lost, confused & hurt..... tbh i dont even know what im asking
15 Replies
I have no advice or suggestions.
But I'm so sorry this is happening. My love goes to you and your family.
Im so sorry, i would think very hard but my gut tells me b or c. If you have the baby, give him the surgery, give him a chance. Theres no wrong answer, I could understand completely choosing three and it may be the hardesr but kindest road to take.
I'm sorry you are going through this. Please seek support from Heart Kids Australia.
I am so sorry to hear that, you must be an absolute wreck. I would prpbably go number 2, but whatever you decide, it's you and your families decision and no one else else gets a vote, they won't be there going through the pain that you will. God bless your at this horrific time xxxx
Number 2 would be my choice. There is always advances in medicine, I feel like they couldn't say for certain that he would die within 30 years. That's a long time for things to change in the medical field! Also, I am so sorry your faced with this x
I'm very sorry. Definitely contact Heart Kids Australia. It's a decision that only you and your partner can make together but I would be opting for option 2 or 3 personally. If you go with 3 though you will probably suffer a lot of guilt and always wonder "what if".
I'm a survivor of a severe heart condition and am healthy, happy and expected to live a long life. There's definitely a lot of advances over the years and things change very quickly.
I'd be going option 2 and not limiting or babying them growing up, let them be adventurous and enjoy their life - let them experience it to the fullest and don't hold them back out of your own fear :)
I'm so sorry you are going through this.
I'd go number 2 myself, you never know what advances the medical world could make in that time.
I am so so sorry. My heart breaks for you (no pun intended). I would go with 1 and get to meet your son. Once you hold him you can then make the decision on whether to let nature take its course or operate. No one knows how long we have on this earth but most of us are grateful for knowing others no matter how long or short it may be. Medical science is getting better everyday and although his life expectancy now maybe only 25-30 years, that may change. You will never regret holding him and giving him a chance but you may regret not continuing with the pregnancy. I wish you well with whatever decision you and your husband make.
Big hugs to you and your family...try and have some hope.. when i was 19 weeks pregnant i was told my baby had choroid plexus cysts on her brain and risk of having trisomy 18.. they said she may be born smaller then an average baby and could shorty die after birth if she was to have trisomy 18..the only way they could definitely rule out that she had ot was by doing invasive testing which could have possibly resulted in miscarriage..my doctor even offered me a termination which i certainly declined.. for 5 weeks i was so upset, constantly crying and at 24 weeks the scan come back saying that the cysts had disolved and they were quite sure my baby didnt have trisomy 18...anyway the only real way of me knowing was to give birth and see..my daughter was born 7pound 3, perfectly healthy and she is now a beautiful 2.5 yr old girl..if i had listened to my doctor and went through with the termination my daughter would never of had a chance at life.. im soo glad i listened to my git instinct and kept my pregnancy going... all i am saying is have hope.. doctors arent always right and if they are atleast you can say that you gave your baby a chance and love him/her for as long as you get with him/ her... personally i would have bub and if they can do surgery.. give your baby a chance and try and stay strong xox
My sil was told this when she was pregnant with my nephew. She continued with the pregnancy and my nephew had surgery not long after he was born. Was very intense few months but he is now a bouncing 6 year old full of beans. He will need more surgery later on but the success rate is high.
Sounds like your little one has a heart condition similar to mine. My boy is now 7 and has had 3 successful heart surgeries and is in second grade. You are so early into discovering about the world of Congenital Heart Disease and there is ridiculous amounts of information out there. Not sure where you are but we are based in New South Wales. It isn't an easy journey but well worth all the tears and heartache along the way. If you are in Australia you can get help through Heartkids in your state. If you like there are also parent support groups on Facebook for Heartkids. Many of us here to talk and support when needed.
Massive gentle hugs to you and your family xox
My only advice is take your time , talk it out , grieve , father as much support around you as you can and get as much information about who what when where etc before making your decision xxxx what a horrible horrible position to be in !
Such a difficult decision. I feel your pain, not that I have been in your shoes, but I understand a little.
My son had a rare form of cancer aged 2. So I will share with you what helped me make decisions during that time: I had to get away from the hospital, it's not a natural environment. I felt pressure and negativity, and so we went home, armed with test results, information (yes scary information re side effects, prognosis, etc) and spent family time with my other 2 kids. We went to the beach. We did normal things. I sat alone in nature, I walked in nature, I meditated, I prayed, and I am not religious! It was only a weekend, but it was what I needed to feel 'right' in saying yes to chemo and another yes to a drug trial where the drug protocol is randomly chosen. Now it might sound counter intuitive, but if you don't think about it, do something enjoyable, something that brings you joy, the answers become clearer the clearer (and less stressed) we feel.
It is an isolating situation you are in, but we have the Internet to connect to people, to ask others of their experiences in a similar situation, and we learn from other people who are not directly involved (and/or vested) in the outcome ie doctors/specialist/family/friends.
Finally, in regard to stats and survival rates. They are based on previous patients. Who knows what God/the divine master/Goddess/the universe has in store for your bubba?! I saw first hand some miraculous and humbling moments during my stays at the children's hospital.
Oh, something else I just remembered. I wrote a little story book for my other 2 kids, to explain how sick their little brother would get (from the chemo) and that he'd lose his hair. Guess what? He didn't lose his hair and he never got sick. He never actually lost his appetite. He did not require tube feeding as expected. He was meant to spend 2 days in ICU post surgery (due to high risk of bleed) but guess again? No ICU. He went straight to the ward, next to the nurses, I had to keep curtain open so they always had eyes on him, but I got to sleep along side him every night. Well not so much sleep, but I lay next to him holding his hand every night.
No-one can know the 'right' answer except you. I felt a sense of calm at my core, deep within somewhere beneath all the confusion, the stress, the sadness, the fear, the sheer terror of the unknown...I do hope you find that place within yourself, it's your place of knowing. Good luck, and may Angels and Archangels watch over you all xx
PS my son is a strapping teenager with a heart of gold and a deep
connection to his 'knowing'
As the mum of a very disabled little boy... born at 24wks... 6 months in hospital after birth 25 operations lhe is 10 years old... his operations were to keep him comfortable and to give his life quality. I can say that his life may not be the same as everyone elses, and i may out live him, and the last 10 years were hard and i could go back and not have made decisions which could have meant he lived no longer than 7 days,... but i could not look at him and tell him his life was worthless.
I think have your little boy and love him and if he gets sick and gets to 5 or 10 or 20 and he understands he is not well and can help you decide and understand then you can choose to no longer treat his condition. I am pro choice and i am so sad this has happened to you- talk to heart kids or a physiological team if you need too... but only you and your family can make this choice. Big big big hugs.
Iam so sorry hear this its all totaly up use . But mabey u could give it a shot see how bub goes after birth and 1st operation i know it wouldnt be a easy dession but i hope u make what u think is rite for use xxx