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Premature birth

Connect with others and find premature birth support.

2 Beautiful Angels born alive at 20 weeks - Both died just over an hour later

58 replies

Becky150409 · 11/05/2009 17:48

Our Story ( it's kind of a novel sorry )- Hopefully our experience will help other people to know they are not alone.

My Husband and I had been trying for a baby for the last 6 years after 3 years we found out that my tubes were completely closed and had only a 1 in a million chance of conceiving naturally, so we decided to try ivf. We were so excited to learn on christmas day that we were pregnant after our third implant. I started to bleed at 7 and a half weeks and we were devistated to think that we were losing our baby. I went to the hospital and was given an ultrasound they found that we had 2 sacs 1 had a heartbeat and 1 didn't. We were sad that one of our eggs didnt make it but were happy that one still did.but I was still very anxious.The doctors told me that the bleeding was most likely the sac that did not have a heart beat and i would have to pass it. Later that night I lost a huge clot so I went back to the hospital the next day to make sure that it was the one that did not have a heartbeat and you can imagine my surprise when they were doing the scan and the doctors and nurses were looking intently at the screen saying are you seeing this. I hadn't been game enough to look at the screen in case it was bad news as the last time I had been pregnant I got to 11 weeks and found out that it had died at 9 weeks. When I looked at the screen I seen there was suddenly 2 heartbeats it was absolutley amazing. I had never been so happy in my life. It was still early so I didn't want to get too carried away but you just can't help it. then we had another scare at 15 weeks when i went for a nt scan and the doctors said that t2 had too much fluid behind his neck and i need an amnio test because he had a 1 in 2 and 1 in 4 chance of having 3 serious syndromes. we had the test and after 2 weeks of waiting we found out that we had dodged all 3 bullits the baby was fine and we found out that he was a boy. At 19 weeks we found out that our T1 was a girl it was just perfect. on the 03.04.09 I started losing a brown discharge and had mild cramping and worried i went to the hospital I was told it was nothing to worry about, it's old blood. this continued to happen and I kept going back to the hospital worried I just felt something was wrong they did scans and told me I had a short cervix of 2.3cms and i asked if i should be worried as i knew twins never went full term and i had my daughter when I was 16 and she came 5 weeks early. they told me they would monitor it. i asked if I should give up work and have bed rest and was told " we will see where you are in 4 weeks" i told them I work in a management position and i am constantly on my feet, and i read that the brown discharge before 22 weeks can be a sign of late miscarriage and was told that i could stay at work i was fine and told not to read my books anymore. 1.30am on the 15th of April i had mild cramping and couldn't tell if it was pressure pain or actual pain so i called the hospital. they told me to come in I called my husband home from work and we went to the hospital. I had a nurse feel my stomach and after a short while she told me that I had had 2 contractions in 10 mins i told her i can't be having contractions as I was only 20 weeks to the day. the registrar did an internal and said that my cervix was open and made a hand gesture of approximatley a tennis ball. she told me not to worry they could do a stitch but she had to see her supervisor. when her supervisor came down she did not even recheck she just said from what she had been told my cervix was closed i asked her to recheck and she said that she didn't need to! they did a quick scan and the babies were fine playing as they do they gave me a shot of buscopan and morphine and told me I would be in for a couple of days to monitor me. I was moved to a ward. Another doctor came to see me at 7.30am and told me that I needed a patch to stop the labour. My husband and i continuely asked for the patch several times and still had not recieved it when they sent me for another ultrasound at 11.30am again both babies were fine they were playing and kicking each other and trying to hold hands through the membrane. the radiographer said that they were fine and still high in the pelvis so i started to breath again but i wanted the patch that they had spoke of as the doctor said it takes a while to work. when i went back upstairs i asked for it again and they finally brought it to me at 1.30pm i sent my husband home because I thought every thing was going to be alright now and he had been up for 50 hours. I was moved to a private room I am not sure why i was trying to rest and all of a sudden with no warning my waters broke at 2.30pm. I called for the nurse and it took them over 5 minutes to come in and told me they only came in because I was crying. I was taken down to delivery. My husband turned up at about 3pm and our beautiful Phoebe was born at 3.16pm she weighed only 280grams and she was 24.5cms long I thought she had been born dead as they didn't move her then our beautiful Dylan came at 3.17pm and landed straight on Phoebe's head and they left him there too. My mother turned up not long after they were born approximately 5-10minutes and the babies were still between my legs uncovered. I was hysterical and told my mother that we had lost them. She went up to look at the twins and then she noticed they were breathing and their hearts were beating. she informed the nurse and she said " well I'll get a blanket then" we asked them to help the babies and the staff informed us that it was legislation that babies under 24 weeks can not be assisted. they told us to spend time with our babies and say goodbye. Our Phoebe lived for just over an hour and Our Dylan lived for an hour and 15 minutes. although they were only here a short time they will be loved always.

OP posts:
Northernlurker · 11/05/2009 18:33

Becky - I'm so sorry to read of your loss. Current medical opinion would be I think that your children were born too young to survive and that the focus should be in supporting you and them in the time you had and caring for you all rather than having them undergo interventions which could hurt or distress all of you. From what you say however the care you've received before and after the birth was woefully lacking and has compounded this terrible experience for you and your family. I hope you make good progress in getting answers for the shortcomings you've suffered. Please keep posting and get lots of support here.

Becky150409 · 11/05/2009 18:36

I will keep you posted on what i find out

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Jack2601 · 15/05/2009 18:13

Becky, first of all I want to say congratulations on the birth of Phoebe and Dylan, I too think it is important to say that and recognise that your babies were born alive and that you had - although cruelly short - some precious time with them.

I am so sorry for your loss and I hope you receive the answers you need. I am angered by what I have read and think it is disgusting how you and your babies were treated.

wotulookinat · 15/05/2009 18:27

I just wanted to add my congratulations too and to say that I am sorry that you didn't get to spend more time with your babies.

HeadFairy · 15/05/2009 18:33

I'm so sorry you were parted from your angel babies too soon. I do hope you find some way to cope with the pain you must be feeling.

OMaLittle · 15/05/2009 18:37

What an unbearably tragic story. I hope you get some answers and the staff who attended you are never so horribly callous/negligent again. My heart goes out to you.

lou222 · 15/05/2009 21:48

I am so sorry for your loss. The way you were treated is tragic and cruel. How can the staff be so thoughtless. Thankyou for sharing your story and please keep us updated
xx

Becky150409 · 22/05/2009 03:08

thank you for your messages still waiting to hear from the health minister they take their sweet time. I did however receive the medical reports and it is complelling to read. so many contradictions you would think that they would get their stories straight

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chilliNchocolate · 22/05/2009 05:34

Hi Becky - I am so sorry for your loss and I think your treatment could have been much more human. It's a long time since I was a midwife so I can't comment on the actual technicalities of the treatment but I CAN comment on the lack of support you were given. It isn't enough to put someone in a side room and forget about that person when they are possibly losing a much wanted baby or in your case babies. The lack of compassion you appear to have been shown is dreadful.

With regard to your babies it might help to know that there have never been any babies who have survived at just 20 weeks gestation - the lungs just cannot cope. I am currently seeing a baby who was born at 24+5 - she is now a year but it has been a long haul for her Mum - she had a twin brother who died within a week of birth. Very premature babies need masses of support in terms of supporting their lives and under 24 weeks it just is not successful. (although there have been the odd case where babies have survived at 23+ weeks). Most need regular blood transfusions with the need to site drips etc and under a certain size you just cannot site drips. I am sure there will be a neonatal nurse or two here and maybe they can advise you in more detail about this.

Of those born at 24 weeks - more girls than boys survive and many (but not all) have long term health problems. Bleeding into the brain is a real risk and most babies have chronic lung problems as a result of the support needed to keep them breathing.

So whatever else goes through your mind please don't feel that you should have done something or made someone else do something for your babies - you did the very best thing in cuddling them while they died and importantly for them they were with their Mum who loved them and not in a special care unit with someone trying to put drips and tubes into them. That's so important.

However, you have every reason to ask questions about your care in hospital. It may be that the scans etc suggested that labour was not imminent but as I said - it's been a long time since I was a midwife so am no longer sure what tests they use. I am sure the tests will have advanced in the last 10 years.

Am so sad that you received such a lack of support in hospital - it makes me sad to think that people working in these environments can lose sight of the humanity needed.

When you feel able to face it then SANDS are very supportive - I know someone has posted a link above. They are worth contacting as anyone you talk to there will either have gone through the loss of a baby or will be able to put you in touch with someone who has.

Upwind · 28/05/2009 17:46

I am so sorry Becky

and at the lack of care

Becky150409 · 13/10/2009 13:53

Thank you to everyone for your kind words. It is very touching to see so many people that care. and thank you chilliNchocolate for your coments i know that my angels are probably better off where they are now rather than being in any pain. Unfortunately knowing it doesn't make it hurt any less. I finally heard from the hospital and i am having conciliation with them on the 21st of October, 2009 but i don't believe that this is going to resolve anything. Nothing they say is going to take away from what they have done. I'm sorry everyone i am just so angry with all of it

OP posts:
pofacedandproud · 13/10/2009 14:00

This is unbearably sad and I am shocked at the way you and your babies were treated. I am so sorry. This needs to be addressed at the hospital concerned.

Becky150409 · 13/10/2009 14:05

i am addressing the doctor who was supposed to be attending on the 21st

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FlappyTheBat · 13/10/2009 14:12

Hi Becky150409,

Firstly I would like to say how sorry I am for your loss and that I am appalled at the way you and your babies were treated.

I can not comment on the midwifery care you did/didn't receive as I am not a midwife, but I do have a lot of experience of attending deliveries of and caring for extreme preterm infants.

I can go into more details if you want me to but didn't want to post first without checking with you first,

Becky150409 · 13/10/2009 22:57

Hi FlappyTheBat,

that would be great i need to learn as mush information as i can get

OP posts:
FlappyTheBat · 13/10/2009 23:12

just checked thread, am about to head off to bed but will get back to you here tomorrow morning.

are you happy for me to go into detail about the delivery & care - if you find it too difficult to read, I will ask MNHQ to delete my post.

Also, I can only comment on the practices that occur on the unit I currently work on and have worked on in the past, however most, if not all UK units will work to the same criteria.

will write more in morning,

c

FlappyTheBat · 14/10/2009 10:35

Morning Becky,

as I said in my previous post, if you find what I plan on writing here too difficult to read, please feel to ask MNHQ to delete this post and I just want reiterate that I can only comment on my own working experience, not what other units may/may not do under similar circumstances.

If a baby is delivered at 24 completed weeks gestation, then they will be automatically resuscitated at delivery. As they are so immature, they will normally be intubated and ventilated and given a drug called surfactant directly into their lungs. Lung immaturity is the biggest initial problem for extreme preterm infants as they have not had the time in the womb for their lungs to mature and start producing their own surfactant. This deficiency can cause long term damage and problems for babies.

If a woman goes into labour at less then 24 weeks but 23-23+6 weeks pregnant, then they will have the opportunity to discuss with a neonatologist/paediatrician, what their wishes are regarding resuscitation.
A team from the neonatal unit would attend the delivery if this is what the parents wished and if the baby was born in good condition and showed signs of life, then they would be resuscitated.
Babies born at 23+ weeks do survive but sadly the greater percentage don't as they really are very immature.

Babies under 23 weeks are extremely unlikely to be offered resuscitation at birth, I have worked in neonates for a very long time and I can only recall 1 22+6 week baby being brought to the unit. Although they were a good weight, their lungs were too small and immature to cope with the work of breathing/ventilation and this baby sadly died at only a few hours of age.

I think what is very very hard for parents, is when a baby is born under 23 weeks and is born alive and they can live for some time and their baby is not offered any help to survive.
In these circumstances, parents are given their baby to hold.
This is because at the moment, the technology just isn't around to help these babies. 30 years ago, babies who were born at 28 weeks gestation were in a similar situation as those babies born today at 23-24 weeks gestation.
Survival rates are improving slowly and maybe in the future, advancements will be made so even more extreme preterm babies will be given a chance of survival.

A baby's birthweight will also have a factor on their chances of survival and again it is rare for a baby of under 400g to survive.
Because of the support extreme preterm babies require in order to survive, this can cause damage/problems that in turn can make them extremely unwell.

Ventilation can cause lung damage and if you are a preterm baby you are more susceptible to lung damage. It then becomes a catch 22 situation as the baby's lungs are damaged by being ventilated and they then become stuck on a ventilator as their lungs are not able to cope with breathing without support.

As an earlier poster mentioned they are at more of a risk of bleeds into the brain, which depending on the severity, can cause a lot of problems in the long term. Inserting lines into small babies can be a problem but most preterm babies who require intensive care will have umbilical lines inserted into their cord, which is an easy way of gaining access to veins/arteries.

There are other problems that preterm babies can have, but the ventilation and haemorrhages are generally the major difficulties in the first week of life.

The smaller and more immature you are at birth, you will normally need an awful lot of support and despite the best efforts, sometimes this isn't enough.

If there is anything else you would like to know, please let me know and I'll try to help.

facebookaddict · 14/10/2009 10:43

So sorry for your loss of your beautiful children and so angry that you have been treated so badly. regardless of rules, I believe more could have been done to ease your suffering after their birth.
Fight for acknowledgment of mistakes/poor treatment if it eases your pain.
They are still together looking after each other. x

starwhoreswonaprize · 14/10/2009 10:43

I am so sorry for your loss and the way in which you, your husband and babies were treated in the hospital.

Give yourself plenty of time to heal and make sure your DH has someone to talk to as he may feel his feeling are to heavy a burden for you. Keep talking to anyone who will listen and take care.

facebookaddict · 14/10/2009 10:46

Flappy - good info, hope it helps you Becky.

What an awful situation for mums (& dads) of babies born breathing pre 23 weeks.

LouMacca · 14/10/2009 11:07

So very sorry to read this heartbreaking news So sorry for the loss of Phoebe & Dylan x x and angry at the lack of care you received, totally unforgivable.

Becky150409 · 14/10/2009 12:09

Hi everyone thank you again for your support and thank you to FlappyTheBat thank you for the information. I do understand that they would have had alot of problems and i understand why they don't resus babies but they didn't explain any of that pre delivery and then give no support after. My main complaint to them and the reason that i am fighting them is the precare before hand. i had been losing a discharge that had turned a beige colour and had slight cramping which i knew was not normal. I went to the hospital several times over 2 weeks previously. They would just do a scan of the twins see that they were fine and tell me to stop worrying it was just old blood. I informed them that i had been reading what to expect when you are expecting and in the book it said between 18 -22 weeks it can be a sign of a late miscarriage. As i had had many problems before and they were ivf and they discovered that i have a short cervix i didn't want to take any chances and because i manage a large bottle shop and am constantly on my feet i asked if i should take my leave early and have bed rest or something, they told me i was imagining things and should stop reading my book. If they would have paid attention earlier my angels may not have come as early as they did. But i do want to thank you for your post i appreciate everything you have said. BTW do you have a first name FlappyTheBat seems so cold.

OP posts:
FlappyTheBat · 14/10/2009 12:35

I think what might help as well, if there was a midwife here who could offer her opinion.

You, in my own personal opinion, have been treated so badly and your concerns were completely ignored.

And they way they treated you after you delivered Phoebe and Dylan was awful,

I was always taught to take a patient's concerns seriously as they were the one who knew their own body better than anyone.

When you are able to have a meeting with the staff from the hospital, if you haven't done it already, I would strongly urge you to write down all the questions/concerns that you have.
It is very easy to feel intimidated in theses situations.

btw, Flappy is fine

busybutterfly · 14/10/2009 22:25

Becky - my thoughts are with you, Phoebe and Dylan. xx

Jojay · 14/10/2009 22:36

So so sorry for your loss Becky. I hope you are finding the strength to get through this

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