RuthB's profile

RuthB
	Age: 37 Country: UK Province/region: Wales City: - Partner: Yes Children: Yes, 1 Pregnant: No Due date: 12 Aug ,2008 Occupation: Education
	Online: 4 days ago. Last updated: 46 days ago. Member since: 163 days
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Millie is here! Born 6.33am on 21st August 2008, 9lbs 5oz

Unfortunately due to clinical negligence Millie suffered hypoxia (oxygen starvation) at birth and had to spend time in the NICU.

Update 3rd Oct: Millie's condition improved steadily and we were able to come home after 2 weeks, but unfortunately then had a setback a week later, and had to go back to the hospital for a while. We are home again now- fingers crossed, for good! Millie failed her newborn hearing test and appears to have some permanent hearing loss (due to the hypoxia), which we are of course very sad about and which is now being assessed, but apart from that, she is, so far, behaving normally and either on target or ahead with all her milestones at 6 weeks. The other lingering issues she is currently suffering, also as a result of the negligence, (including subcutaneous fat necrosis over most of her back and shoulders, and hypercalcaemia) should all resolve by 6 months, and she is a happy baby in spite of them- we are just loving her to bits! And counting our blessings, since we were told initially after her birth when she was in the NICU that things might turn out much, much worse than this and that we may even lose her. We're trying to stay as positive as possible and hoping that the hearing loss won't be too serious (the audiologist was very encouraging at our last apt, saying that they should be able to correct it with hearing aids enough for her speech/language to develop as normal) and that it will be the last 'big' issue we have to deal with. The other main question mark is over her ability to learn, and although thankfully so far there is no sign of impairment.it is one of those things that we will only know for sure with time.

We are loving our little girl no matter what as we always knew we would- and having lots of fun with her in spite of the problems! She is a brave little star and we are incredibly proud of her!

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mariska - Monday, 10 November
Good to hear from you. Hope you are enjoying your time with your little girl. I hope all will turn out well with her hearing too! All well here. Another routine check tomorrow, but I think Benjamin is doing really well. He is a little giant, cannot believe how fast he is growing ;)) Take care. Mariska

Laura Ward - Wednesday, 5 November
Message to all: Message to all: Because of the controversial opinions and thoughts, please do not continue to discuss politics on the site. This includes private or public messages, comments, quotes, etc on ALL pages of the site, whether it be a weekly or monthly forum, your personal page or a friends page. If you choose to continue posting once this message has been posted, your account will be deleted from the site. Please report any member that continues to post these messages. Thank you all for your cooperation and help keeping this site friendly for everyone!

cntrygrl123 - Tuesday, 7 October

Millie is just radiant. I hope everything turns out well for you all. She looks like a very healthy, happy little girl.

Laura Ward - Monday, 6 October
Message to all This may be interesting to some of you. Seema`s email is seema.modhvadia@rdftelevision.com

Hi there,

I work for a television production company based in the UK . We are currently making a documentary for ITV1 exploring the issues surrounding pregnancy and eating disorders. The film will be a thoughtful and insightful look into this extremely sensitive subject.

We’re in the research stage of our production and very keen to chat to women who are, or have been, pregnant whilst having an eating disorder.

If you’re interested in having a chat or finding out more about our documentary, it would be really great to hear from you. All communication would be in complete confidence.

You can contact me on: seema.modhvadia@rdftelevision.com

Sx

cntrygrl123 - Tuesday, 30 September
Update - Had our baby the night before last. She was born healthy. Follow-up U/S showed everything to be normal. Her vents looked so normal that the sonographer didn't even see any need to measure them. Thank Goodness! Thanks for all the feedback over these last long weeks. Take Care - Jaime

cntrygrl123 - Tuesday, 23 September
Hey Ruth,

I have another question when you get a chance. I'm due any day now, but when I saw the OB yesterday he said she still has not dropped. In fact he says it looks like she's no where near that point.

Anyway, when I asked my perinatologist, she said that results from a karyotype done on a baby come back much sooner than they do when done via amnio. Yesterday, I told the OB I wanted this done, and asked him if they do it with the cord blood. He said No, and told me that the pediatrician will take care of it. I'm thinking the results will take two weeks to get back if it is done that way. I'm not excited about having to wait another 2 weeks. Do you know if this sounds right or how this should work?

Thanks in advance. Your little girl is gorgeous, hope you guys are doing well..

mariska - Monday, 8 September

Well done, she is really cute!!

mariska - Monday, 8 September
Congratulations! Hope you will be able to leave the horrible experiences behind you and enjoy little millie. Enjoy!! - Mariska

turtlemom - Monday, 8 September
I am so glad to hear that you and little Millie are doing well. I cannot imagine the anguish you have gone thru with the medical negligence. I had Chinese food the other day and got the following fortune in my cookie, "Do not give up; the beginning is always the hardest." I think it is fitting for both of us.
Lots of love to you and Millie from Parker & Amy!

cntrygrl123 - Sunday, 7 September
Hey Ruth,

Good to see you and your baby are doing well, I was worried as it had been such a long time!! I'm interested to hear what happened to you in the hospital and I'm relieved to hear that your little girl has no complications. Glad to hear also that her prenatal dx of VM is now obsolete.. My perinatologist said that with the very mildest cases that often turns out to be the case. We had our last visit with our perinatologist this week. We had the same hasty sonographer but the vents according to her measurements are still measuring just under 1cm. The perinatologist said they are stable and that we don't need to come back now. They are still finding the spot in her heart, though. I only have a few weeks left, so we'll just have to wait and see what happens when she is born. Our pediatrician says that antenatal sonogram findings are many times incorrect. So, we are more likely to have a clearer picture when she is born. He said he will do an echo and CT/Sono on her soon after she is born. Glad you are home and doing well.. What a pretty name!!

coronation street - Sunday, 7 September
Congratulations Ruth! I have been waiting to hear; it sounds like you have both been through a lot and I'm sorry to hear the birth didn't go as it should have. I love the name Millie.
Take it easy and we all look forward to an update when you're ready.
Lesley

Ali-s - Friday, 29 August
Hi Ruth

Been thinking of you and beginning to worry as we haven't heard anything from you in so long.
Hope all is well with you and the baby?
Hope to hear from you soon.
Ali xxx

irishgal79 - Wednesday, 20 August
hiya ruth i think u must b in hosp u hvnt been on in 4days!im realli thinkn of u hun and hope everythin is ok and u hav ur wee bundle of joy wrapped up in ur arms get in touch asap xxxxx

cntrygrl123 - Wednesday, 20 August
Hey Ruth, I bet you had your baby girl!!! Hope you all are doing well!!

lele316 - Saturday, 16 August
Hi,
Thanks for replying to my post. I have discussed it with my doctor and she doesn't think it will be a problem but she cant say for sure, but she has also told me that anyway I have to be in a comfy posistion would be fine, so I'm alot less nervous now. Thanks again though.

Ali-s - Friday, 15 August
Hi RuthB,
Was just thinking about you earlier and wondered If that baby of yours had arrived yet but after reading the forum, I guess not!
Great to hear the vent measurements look good.
Shouldn't be long now and don't worry about the whole labour thing, my next door neighbour, who is 86 yrs old, says it's just like having toothache for a day!!!
Speak soon and good luck.
Ally XXXX

cntrygrl123 - Friday, 15 August
Hey Ruth! Yes, I thought you'd most likely had your baby girl by now!! Sounds like the updates are getting better and better as far as the VM goes; very encouraging for the rest of us on here.

I did have my appointment for another U/S scan two days ago. It was more or less a Fiasco. When we arrived to the perinatologist office, my husband went up front to check me in b/c I was in the restroom. They told him that we didn't have an appointment. They asked us for an appointment card (It was at home taped to the calendar). They then went to 'look for the chart.' Never once did they take us for our word. So, we sat and waited until the nurse came up and told them that though there was no appointment in their system, I was supposed to have serial US' done every 3 weeks- and now would have been about that time. They wound up working us in. It was a different sonographer this time, so of course the measurement was different.

It was about noon when they finally got us in for the scan and it was pretty obvious that the sonographer was inconvenienced (probably had to miss her lunch break). She was very hasty and moved quickly through the entire scan. She was rude and refused to answer simple structural questions. She was having difficulty seeing the vents to get measurements, but from what she was able to get, they measured 8-9 mm this time. SHe also made a short hand note that the spot on the baby's heart is still there, but my husband & I were both looking hard for it while she was looking at it & never saw it.

While the measurements of the vents are encouraging, our assessment of the whole appointment and scan that day is that we may as well have stayed home. I didn't see the Dr. this appointment. I am set up to have a scan every 3 weeks and speak with her every 6.

There is only one perinatologist in my city so unfortunately we'll just have to stay where we are. Saw my OB the following day and he went over the report with me. The head itself is now measuring just inside normal parameters.. I was unaware that her head itself is measuring up in the 90th percentile. Again, somewhat scary considering my son's head is still and has always measured in the 20th percentile.

I'll just be glad when she's here and we can get a real feel for what is or isn't there. All these measurements are so subjective, it's like a really sadistic game of pin-the-tail on the donkey. Again, good luck with your L&D. I hope you are comfortable, when I was preg with my son, the last 2-3 weeks were pretty painful. Will be waiting to see pictures of the little girl! I'm glad things are looking so much better for you!! Thanks Ruth.

turtlemom - Thursday, 14 August
Hi there, thank you for the message. I'm very excited, just like you are. I'm so glad your situation turned out the way it did. There are so many moms worried out of their wits that can benefit from your experience. I'm sure you have given relief to moms reading the board. Let us know when your little girl makes her appearance! You will have to post pics!

coronation street - Friday, 8 August
Hi Ruth, I'm feeling better after seeing the OB. Looks like my situation may be similar to yours, unilateral and relatively mild. They asked me about the flu that I had at 13/14 weeks & how bad the fever was, it was mild. I think fever is more of an issue in the first 12 weeks and relates to Spina Bifida. They didn't seem concerned about the head size and felt it wasn't related to the one larger vent, but is genetic. I can't see how one 3mm vent could make a head significantly larger but that was me being paranoid. As for the Down's marker, I had the first trimester screen and a nasal bone & palate were present and no nuchal fold increase, which is very important. The stats I was given seem to suggest that enlarged vents affect all or both lateral ventricles and isn't the top indicator of it, plus small head and body size are also indicators, certainly not my problem.
I wish you all the best for you upcoming birth and look forward to hearing about your healthy and happy baby. Please keep me posted.
Lesley

cntrygrl123 - Monday, 4 August
Ruth - So happy about your good news!! Sounds like you're in the all-clear now, that's wonderful!!

I did get the formal report on our MRI. Really the only information it gave was that the enlarged vent on the right side was measured at 1cm. Also said there were no other abnormalities noted. The radiologist did say that it was hard for them to get good images on account of her moving so much. Maybe that's why it didn't yield more information. We too have decided not to have the amnio done. I've read that babies born prematurely are often subject to brain damage, so I don't want to compound the situation that may already be present.

I do know for sure that the enlarged vent has stayed the same from July 14th to the 28th. My next U/S scan is on the 12th of this month. Hoping for the best. I'm kind of like Mariska, just hoping everything turns out ok when they do the work-up on her after she is born. Do you know, what is likely to be expected as far as that goes? Will they do an MRI or U/S or both on the baby? Sounds like they will be able to do the karyotype from the cord blood?

Good luck with your L&D! Thanks again for answering all my questions. I keep coming back to you because it has been my impression that you really know your stuff when it comes to VM. In fact, when I met with the Perinatologist for the first time there was very little she told me that I didn't already know... Thanks!

nickyv - Monday, 4 August
thanks! :) it really is the best feeling in the world. i live for every morning that i get to go to the NICU to see her. i can't wait until she finally comes home. she just has to perfect bottle eating (she only takes half her bottle now before getting too tired) so hopefully as she gets a little bigger she'll get the hang of it!

turtlemom - Monday, 4 August
I'm so glad you have good news to share! It is always wonderful to hear when things go well! And there have been so many positive outcomes. We are hoping for the best but prepared for the worst. Instead of praying that God will fix my little Parker, I've begun to pray that things will be as they should be. If we were meant to have a special needs child, I pray that is what I am blessed with.

zacs-mum - Monday, 4 August
Hi Ruth - thanks for that...I don't feel too bad now after catching up on the forum. I think the problem with 'other' people is that they obviously don't know what we've had to try find out about VM, they only hear what I tell them and the words '50/50' or 'disability' and presume the worst of the worst.

Also can't help wondering how many adults there are walking around with bits of brain missing and things like VM because it wasn't looked for 'back then'!

All the best for the little girl, hope she enjoys school!

Thanks again
Adele

mariska - Sunday, 3 August
Congrats on your news too - sounds like your baby is going to be fine!! I am still dreading the check after the baby is born, I still worry that maybe something in the brain is missing, but then again we just have to wait and see. Having said that I am over the moon that everything is measuring spot on, that is a very good sign to me! Ejoy your last days/weeks and don't forget to put pics up when she has arrived!!

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Photos

Baby Millie, aged 2 weeks (2008, 09, 08)

Dark days... :( Millie aged 1 day old, in the NICU (2008, 09, 08)

Daddy visiting Millie in the NICU, aged 2 days old (2008, 09, 08)

Millie aged 3 days old, finally waking up!!! :) (`Hey! Where`s my mum?!`) (2008, 09, 08)

Mummy & Millie, finally home from hospital (2008, 09, 08)

Grandad Chris with Millie (his first baby granddaughter!) (2008, 09, 08)

Having a good look at Nanny Sue! (2008, 09, 08)

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