Half a heart - my heart is breaking too.

[Munchkin30]

Hey all,

Hope I can get some help or support here. I am 20 weeks after a mmc at 12 weeks last July. I also have a dd. At my normal 20 week scan on Friday everything was fine - except they couldn't get a normal 4 chamber view of the heart. They referred me for specialist scans but wrote on my notes various things including finally 'hypo plastic left heart syndrome'. This is basically half a heart and fatal without treatment and a series of dangerous difficult treatments through early childhood still leave the child with major problems, eventually needing a heart transplant if they live long enough.

I have a 2 year old and I know how painful it would be to have to watch get go through this knowing she could well die very young and almost certainly in my lifetime. I also can't watch the baby living a life of pain and suffering and not see my dd1 as she grows up because we're continuously in hospital, then watch her see her sibling die.

The specialist appointment is booked for Tuesday 11th but I am nagging and mithering the hospital to be seen sooner as they know how serious this is and we have very difficult decisions to make as I feel the baby kick and move more and more each day.

In my stronger moments I dare to pray for a miracle or this to be a big mistake or the condition to be less serious but I am also trying to look to the future if we do lose this baby.

I'm not sure what I'm asking for really but hope, advice, experiences??

Thank you all for reading this anyway xxx

 

[sophxx]

I'm so sorry I've no experince but have you joined ethnically parental loss section they might be some parents in there who have. X

 

[klsltsp]

I don't have any advice, big hugs to you!!

My experience was with my first ds I had my 20 week ultrasound, they couldn't find one of the valves for his heart. I remember my doctor telling me "NOT TO GOOGLE IT" haha I did anyways and worried like crazy. I had to wait 2 weeks for another u/s and everything was fine, it was just a little slow in developing. My ds is now 7 and is perfectly healthy.

GOod luck.

Kim

 

[Munchkin30]

Yes I love the 'whatever you do don't google it' advice. We had that! It's nice to know things might not be seen on the basic scan although I suspect it's harder to hide entire heart chambers I almost dare hope for a more positive outcome but 99% of me knows or needs to expect the worst here xx

 

[slg76]

Munchkin, my heart hurts for you. I'm so sorry

 

[Munchkin30]

Thanks sig. I might be back in the waiting for ov gang again soon x

 

[slg76]

Take this in the good way, but I don't want you back! I want you to be pregnant and healthy! I can't imagine the heartache you must be in. So terrible to be put in the position to have to make decisions like this.

 

[Munchkin30]

Thanks sig. After 4 days of devastation and tears I feel numb today. The hospital have bumped my appointment to Thursday which is good because we'll know the answer but bad because they must know it's serious. I'm trying to plan ahead and be prepared if the worst does happen. It's heartbreaking but in some ways I've already let this baby go. Sounds silly when I read back but I'm struggling to be hopeful and I have to stay sane. My dd is absolutely saving my sanity xx

 

[embo216]

I know it's easier said than done but do try not to panic and not to google. I've been in a similar situation twice now, with my 1st and 3rd babies. The 20 week scans are purely really to spot a problem and then you'll know what your dealing with. With our 1st born they told us our daughters lungs weren't developing, we then saw the specialists on Christmas Eve who told us something completely different, she did have to have open lung surgery in the end once she was born it was a much better diagnosis than first thought.

Keep faith till you know, I must admit I found it very very hard to bond with my children, I was scared to bond incase they got snatched away.

Keeping you in my thoughts for Thursday xx

 

[Munchkin30]

Thank you embo that's really helpful. In my stronger moments I dare to find a tiny bit of hope but the rest of the time I can't risk it. I just feel like it must be fairly easy to see 4 chambers of a heart if they're there?? And hypoplastic left heart syndrome is meant to be easy to spot. I'm praying with every cell in my body that it'll all be a big mistake or won't be as serious but it's so hard. What happened with your third? Xx

 

[going_crazy]

Hi hun, just to let you know that my daughter was born with a rare and serious combination of heart defects... I'm also members on several support groups where I know people who have children with HLHS.
DD wasn't diagnosed until she was a day old so I cannot help in that respect, but she has had heart ops (due another one soon) and I can point you in the direction of some groups if you'd like?
Which hospital have you been referred to?

Also, without a specialist scan, you really don't know what's going on, so please please try to stay away from google
xx

 

[slg76]

the waiting must be so very hard. I'm an action oriented person and feeling helpless is the worst. I hope you get some concrete answers on Thursday and that the diagnosis isn't as bad as you think it might be. When I had my missed mc a few months back every part of my brain knew that the baby was gone but my heart wouldn't accept it for a couple more weeks. It's impossible to give up all hope. Hang in there! Sending a prayer your way

 

[mecia]

I have no experience in this situation, but I am sending many prayers and positive vibes your way.

 

[jenmcn1]

Praying for you. I'm so sorry. So devastating. I don't have experience with this, but I was told with my daughter that she had an enlarged heart at 38 weeks, that she may have heart surgery and complications etc. turns out that at her birth she was fine. The ultrasound was wrong. They put her through 2 days of tests when she was born. ECG, monitoring. Specialists were on hand at the csection. I say all this to give you hope that ultrasounds are not always accurate. Hang onto that hope momma, I know it's easier said than done. Blessings to you and your family

 

[Munchkin30]

Hi hun, just to let you know that my daughter was born with a rare and serious combination of heart defects... I'm also members on several support groups where I know people who have children with HLHS.
DD wasn't diagnosed until she was a day old so I cannot help in that respect, but she has had heart ops (due another one soon) and I can point you in the direction of some groups if you'd like?
Which hospital have you been referred to?

Also, without a specialist scan, you really don't know what's going on, so please please try to stay away from google
xx

Thank you x is your daughter ok? I've been referred to Birmingham women's, we're about 30 miles away from there though but I think they know their stuff. The hospital said not to google but that's so hard when you have a specific condition written down. It would be great to be in touch with a support group xx

 

[Munchkin30]

the waiting must be so very hard. I'm an action oriented person and feeling helpless is the worst. I hope you get some concrete answers on Thursday and that the diagnosis isn't as bad as you think it might be. When I had my missed mc a few months back every part of my brain knew that the baby was gone but my heart wouldn't accept it for a couple more weeks. It's impossible to give up all hope. Hang in there! Sending a prayer your way

Yes I had a mmc found at my 12 week scan in July. It was simple though and was just a big blob on the ultrasound screen so there was never any doubt. It was devastating but 48 hours after diagnosis I was in hospital having medical management. The waiting is killing me, but in some ways I think we've had a chance to grieve this baby for if we do need to say goodbye. I don't know if I'm just being totally negative and expecting the worst or it's protective pessimism or I really know this baby won't make it but it's almost easier to expect the worst than dare to have hope xx

 

[Munchkin30]

Praying for you. I'm so sorry. So devastating. I don't have experience with this, but I was told with my daughter that she had an enlarged heart at 38 weeks, that she may have heart surgery and complications etc. turns out that at her birth she was fine. The ultrasound was wrong. They put her through 2 days of tests when she was born. ECG, monitoring. Specialists were on hand at the csection. I say all this to give you hope that ultrasounds are not always accurate. Hang onto that hope momma, I know it's easier said than done. Blessings to you and your family

That's crazy. That's one of the things that really terrifies me is them getting it wrong. I'm trusting my unborn child's life in the hands of total strangers. So glad your daughters ok xx

 

[kit10grl]

Like the PP said its not so much that the ultrasound is wrong but its so easy to make mistakes. The babies heart at 20 weeks is the size of your thumbnail. And they are viewing it through fluid and tissues on a wiggly baby. They can often miss things or think there is an issue because they couldnt get a good angle.

With DD we were told that her condition is missed on ultrasound more than 50% of the time. Other times its diagnosed during an ultrasound but then at birth when they get a good look its not as bad as it seems. When we were admitted to Yorkhill this was proved to us, the family in the next bed had a baby born within a few hours of DD. They had seen no problem on ultrasound and baby had gone home 'fine' only to be rushed into hospital when she collapsed blue at home. She had the exact same TWO conditions as DD. We had never gone home and had been on medications to slow her heart development. DD's surgery was a planned calm affair, the other baby was rushed into emergency surgery.

It is scary to experience this but we would all rather they were over cautious than not. Even if the condition is serious enough you follow through with some of the options you are considering it will be marginally easier in the long term than if you had gone to term expecting a healthy baby. I truly hope the situation isnt as bad as is feared. xxx

 

[beagleowner]

I know someone whose daughter has HLHS. I wish it were ethical to post a photo of someone else's baby on here so I could show you how healthy she is. Unfortunately, she has had to have heart surgeries, but she's come through them marvelously and you'd never know she had a heart condition.

 

[slg76]

Thinking about you and your scan. I hope it goes as well as could be hoped for