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Original poster

Premature baby possible hole in heart.

23 replies

CHOCOLATEPEANUT · 18/03/2009 23:14

My friend had her first child a little boy a few weeks ago and he was born 4 weeks early weighing in at 4.5 lbs

I am seeing her tomorrow and she told me today that he has a hernia and also a suspected hole in heart though maybe a murmer (they are going to hosp next week)

She said hes not gaining weight as his heart working overtime so burning calories and shes obviously scared.

i dont know anything about this sort of thing and want to offer some words of comfort tomorrow if i poss can

anyone know anything?

OP posts:

Original poster

CHOCOLATEPEANUT · 18/03/2009 23:22

anyone?

OP posts:

Shitemum · 18/03/2009 23:32

bump

micku5 · 19/03/2009 00:09

my dd2 was born 6 weeks early and when she was 3 days old they found she had a hole in the heart. Obviously very upsetting news for us as they suspected she had Di George syndrome (later confirmed)

The VSD (hole in heart) that dd has is one that is closing so her cardiologist is happy to leave it and see instead of operating.

The only thing i can suggest is be there for your friend whatever the outcome.

upagumtree · 19/03/2009 00:25

It sounds as though the little one has a Patent ductus arteriosis which can be quite common in prem babies. A PDA as its called is where a valve in the heart which keeps the baby oxygenated in utero doesn't close properly after delivery. These can repair themselves usually in a baby of this gestation but sometimes will require medication. It's just a prematurity thing which hopefully will resolve itself. If it is indeed a PDA. Fingers crossed that all is well

micku5 · 19/03/2009 00:30

Upagumtree...I forgot about that. DD2 had 2 PDA's which did close up.

So hopefully it will all work out for the best chocolatepeanut.

Original poster

CHOCOLATEPEANUT · 19/03/2009 20:39

micku5

forgive ignorance but can you tell me about di george?

OP posts:

micku5 · 20/03/2009 08:13

Hi, in a nutshell it is a chromosome deletion and the second most common cause of congenital heart defects. Also known as chromosome 22q11.2 deletion. However it not particularly well known as often the symptoms are mild or sometimes there are no obvious symptoms at all.

max appeal are a charity that supports families of di george babies and has loads and loads of advice and practical information.

How's your friend and her baby? Have they said if its just a murmur or something more serious?

upagumtree · 20/03/2009 10:16

micku5 · 20/03/2009 16:55

Looking at the documents I have for dd2 it says someone with 22q11 deletion has a very small piece missing from the 'q' arm of their chromosome 22s. So they have the 46 but only a bit is missing.

The GOSH website has more information about Di George (but I think most of it is on Max Appeal)

Does your ds have any heart problems?

upagumtree · 20/03/2009 17:00

He had a murmer when he was born which resolved. However we are awaiting a cardiology referal because he gets quite tachycardic at times and breathless.

Thanks for looking that up fo me

micku5 · 20/03/2009 17:01

No problem. Hope it all gets resolved soon.

Original poster

CHOCOLATEPEANUT · 20/03/2009 19:45

I saw my friend yesterday.her ds is still quite small but gaining weight. He was 5 weeks early and was 4lb 12.He is now 8 weeks (3 really)and over 6lb.He is on 2oz every 3 hours but goes 5 hours in the night Hes a lovely contented baby and my friend is made up.

When he was born a few docs made some remarks about his looks and said something might be wrong. Little chin and low down ears but a doc who deals with prems said hes totally normal and typical prem baby which i said too having seen a few

but now he has a hernia and murmur (suspected hole) and they keep saying its all linked to something but despite little love passing all his chromosone tests its still hanging over them which i think is awful

hes at hosp next week about his heart and i think they just want to know that everything is going to be ok and its just a case of him 'catching up'

she said whatever it is they will deal with and i could have burst into tears as i think it being her first shes had such a tough time and shes so lovely and very brave

OP posts:

DLI · 20/03/2009 19:55

I hope your friend's baby is ok. My ds, like Micku5 was diagnosed with di george and had to have lots of tests to see exactly what problems he had or didnt have. He has been in and out of hospital a couple of times and we are at hospital for appointments every couple of weeks. It is amazing what doctors and hospitals can do nowadays and your friend's baby is for certain in the best possible place.

micku5 · 20/03/2009 20:01

DLI, how old is your ds?

My dd2 has been in and out of hospital over the last 2 years but thankfully we are beginning to see an improvement health wise with her.

She has got severe speech and language delay but we get by on gestures, pointing and grunts lol

Original poster

CHOCOLATEPEANUT · 20/03/2009 20:34

but as my friends baby has passed chromosone tests he cant have di george can he?

OP posts:

micku5 · 21/03/2009 08:59

Chocolatepeanut, glad to hear your friends baby is putting on weight.

I have to say though that low set ears and small jaw are also signs of Di George. The other sign that tipped the doctor off with dd2 was her long slender fingers.

Do you know if the baby had the FISH (fluorescence in situ hybridization) test? this is the specific test that is used to show whether or not this region of chromosome 22 is present.

Reading some of the MA chat forums there are parents who have had their child tested several times before positive diagnosis has come back. They didn't necessarily have heart problems but others that were on the Di George spectrum.

DLI · 21/03/2009 18:04

micku5

my ds was five in November 2008. also had a cleft palate when he was born which was how he was diagnosed with di george (had some extra blood tests done). apart from a low immune system health wise he appears to be fine. however he does have delayed speech and delayed learning. has had an operation to repair cleft when eight months and due for another one soon. he also had an undescended testicle which was operated on which was because of his di george the doctors said. he has very long tapered fingers which are causing him a problem with his motor skills. how old is your dd2? What has she been in hospital for?

micku5 · 22/03/2009 09:38

She is going to be 3 in July. She ws diagnosed with a VSD, has partial immunodeficiency, acute asthma, delayed speech and possible learning difficulties. I am also waiting for another assessment from her physio because she is finding it painful to walk for long (ankles turning outwards and possible curvature of spine)

The doctor who examined her and discovered the hole in heart, also thought she was dysmorpic ie small chin, nose, low set ears and of course the long slender fingers which were a give away.

However, she has been in hospital numerous times for breathing problems and chest infections. She's had pnuemonia 3 times and bronchiolitis twice, the first time resulting in PICU for 2 weeks.

Since she's started on AB every two weeks there has been a dramatic improvement.

Whereabouts are you, we've in the South East.

Original poster

CHOCOLATEPEANUT · 26/03/2009 22:02

friend is now in hosp as baby not gaining weight so tube feeding
went to see another doc about heart prob and told that two holes and one large

i am so worried as hes so tiny. friend said hes started on meds

please tell me things will be ok?

OP posts:

Original poster

CHOCOLATEPEANUT · 26/03/2009 22:50

bump

OP posts:

Saggarmakersbottomknocker · 27/03/2009 13:23

Chocolatepeanut - my dd has significant heart problems, is on meds following surgery as a baby and recently, and was tube fed for a long time. I'm sure things will be OK - it's just this initial period is tough especially with a premmie. If baby needs surgery they usually try to get them up to a decent weight first so initially the meds and tube feed is the way to go.

I post here on the Heartline message board. Please pass the link on to your friend. She will find loads of support there.

micku5 · 30/03/2009 16:11

How's your friend's baby? Is he still in hospital? Have the meds started to do their job?

Mammina · 30/03/2009 16:48

hi chocolatepeanut, sorry to hear your friend is going through this. my brother's baby had a hole in the heart (a couple I think), they only discovered this when she was about 2 months old, she was constantly feeding but not gaining weight. Anyway they said there was a chance the hole(s) would close by themselves but they didn't, so she had to be operated on - it was such a stressful time bec the op had to be put off so many times bec of viruses & also they needed to get her weight up. She eventually had the op when she was 6 months old (they said that without the operation she would not have lived past her first birthday), and the change in her was astounding, almost overnight. She is now 2.5 and is a different person, loads of energy, a stocky little thing and leads a normal life. They will need to monitor her I think once a year but fingers crossed she seems to have made a full recovery. So just wanted to let you know that even though it's so scary at the time and you feel so helpless, they are tough little things and there are so many success stories, I hope your friend's baby is one of them.
All the very best
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