Please forgive my ingnorance but I do care & want to learn ( explanation needed

[marie Ethan's mum]

I have been posting for a while now , and noticed in that time alot of the problems that have robbed us of our precious babies have intials and we talk about them in our post but  I have never had the courage to ask a bereaved parent for fear of upseting them what the the initial stand for and what the conditon actually  is

My son ethan was prem but  actually lost his life to the dreaded MRSA , luckily for me the press are very good at spreading awareness of this so it is one of the easier one to understand but there are so many I just don't have a clue ,

I want to understand I want to take the time to learn because all our angels are the important to me 

if anyone would like to add to this thread  and give  a little insight ,i'd personally be honoured to know a little  more or just to be able to think to myself when I reply to a post from a mummy, refering to SMA or CHD, or NEC  ( for examples) what they stand for  , so I can google it and learn more  myself  it is too painful to explain  to someone on here

[Susan - Tobias & Tanesha's Mummy]

Hi Marie,

Tobias died from NEC short for Necrotising enterocolitis.
A little about Nec - NEC is the most common surgical emergency in newborn babies and tends to affect more babies born prematurely than those born full-term.
Necrotising enterocolitis (NEC) is a serious illness in which tissues in the intestine (gut) become inflamed and start to die. This can lead to a perforation (hole) developing which allows the contents of the intestine to leak into the tummy. This can cause a very dangerous infection. It was this infection that caused Tobias's bowel to compleatly die which the toxins released caused major organ failure.

 

[mel - jakesangelmummy]

Sma = Spinal Muscular Atrophy
cdh =congenital diaphragmatic hernia
nec =   necrotising enterocolitis

hope that helps you marie

xx

[ConniesMammy.]

Connie was born with CDH Congenital Diaphragmatic Hernia,it is a a defect which can happen any time during your pregnancy (even though most mws nurses will tell you differently).
The diaphragm doesnt close or has a hole in it/ruptures,then the lung doesnt develope properly sometimes at all as in Connies case.the stomach ,intestines and liver were all up in the lung space and her heart was being pushed tightly across to the right of her body being squashed by her better lung,causing pulminory hypertension,then the baby is unable to breathe for theirselves,and need exstensive care after birth.
If the baby does well which a lot do,they get slowly taken off all the meds and tubes etc and go to surgery as soon as is possible to get a gortex patch put in place of the herniated area,and all the organs moved back into place.Children who survive Cdh can have many problems throughout their lives most get reflux,and some reherniate.Hope this answers your question and Thankyou for asking.

[Adams Mum]

Thanks for asking Marie - I was the same and unsure what a few abbrieviations were.     But it seemed everyone else knew, so didnt want to put my foot in it by asking.

There's no abbrieviations for Adam but he had anencephaly - a form of spina bifida where the skull doesnt form properly.

[Belles Mummy]

Thanks for asking too, I always look up abbrieviations but you dont always get the correct answer so it is always best to ask the person involed I think,

SMA satnd for Spinal Muscular Atrophy, there are 3 different types and Belle had type 1,

This is the most severe form of SMA. Its effects are seen within the first six months of life, and can affect babies even before birth. Mothers frequently remember that their baby had become less active towards the end of pregnancy.

Within a few weeks or months of birth, babies are limp and floppy because most of their voluntary muscles are affected. This means that babies are unable to lift their heads, have difficulty rolling over and are unable to sit unsupported. Muscles used for sucking and swallowing can also be affected and may cause difficulty when feeding. Most babies are still able to make the most of their limited abilities,  What they seem unable to do physically, they appear to compensate for with facial expressions, particularly their beautiful eyes and smiling faces! Also it must be remembered that the brain is totally unaffected and these babies are often bright, alert and responsive.

However, it is usually difficulties with breathing, coughing and the baby's susceptibility to respiratory diseases and infections which make it unlikely that babies suffering from SMA Type I will live to see their first birthday. It must be remembered, though, that it is practically impossible to put a time limit on each baby's life, because they are all so very different (with differing muscles being more affected than others). Many consultants inform parents at the time of diagnosis that SMA Type I babies can live up to two years old (which is medically correct). This, however, is exceptional. The majority of babies (approximately 80%) die in the first year of life as there is no cure,

[marie Ethan's mum]

thank you girls,  sorry I have had to ask but I wish you where all as unaware of these terrible  conditons  as I was because that would mean you would still have you babies with you all . if anyone else would like to add to this post  conditions that have had a effect on them other please feel free to do so xxxxxxx

[mel - jakesangelmummy]

I'm sure most of you have heard of pre eclampsia as it is very commonly tested for in pregnancy.

It is basically extreme hypertension in pregnancy. It can be fatal to both mother and baby. It causes blood pressure to rise Uncontrollably and Uric acid to build up in the bloodsteam. It is not known what causes it but most specialists seem to agree that it is the womans body identifying the placenta as a dangerous foreign object and attacking it much like an allergic reaction. In mild cases it can be controlled with medication until term but the only cure is delivery of the baby and placenta.  It can cause growth restriction, premature delivery normally by induction or c section to prevent further risk to mother and baby and it is also the cause of many still births as in my case.

It really is a silent killer, there are many symptoms we are told to look out for but in many cases people do not feel unwell. Or the symptoms are similar to those you would expect in later pregnancy, swollen hands and ankles, extreme heartburn, headaches, blurred vision and sharp pains around the diaphragm area. As I said all women have urine test and blood pressure checks to moniter for PE developing but the safety of the unborn baby depends on the medical management of the information gained from these tests. In my case and in many others, the warning signs were spotted too late.

Hope that helps anyone who didn't know what PE was and the effects it has

[Bretts mummy Emma]

Marie I don't want to insult your intelligence when I write this but it may also help others reading this post as well. Brett died due to SUDI which stands for Sudden Unexpected Death in Infancy. Can also be known by SIDS Sudden Infant Death Syndrome or cot death as it is known more commonly. Brett's cause of death is SUDI yet I use SIDS as it more commonly used yet somehow I feel like I'm robbing him of something ??? 


 

[mum2evan+dyfan]

just an idea but could this be used as a sticky post in the section it relates to?
we could have a sticky post with the abbreviations and explanations and then we could always add to it if there are new ones?
that way new members would be able to always read the explanations and we could always refresh our memories from time to time?

Kathxxx

[ConniesMammy.]

Thats a great idea Kath and whenever someone needs to understand a bit more about someones Angel we can point them in this direction.

[Olliemam+1]

I have set it up as a Sticky Topic xxxxx

Take care

Dawn xxxxx.  

[***clairelouise-finlays mummy ***]

  thats a great idea x set it up as a sticky topic x

[tasha]

My two angels ellie and marcus jack had a condition called lethal skeletal dysplasia, which is basically and abnormality of the bone growth. In some cases, babies can live and live life normally but are "dwarfs". In my case it was a lethal form where it affected the development of the rib cage, which actually affected the development of there lungs. I now can no longer have any children. :-( Xx