| Name | Comments |
| Delores | 29-06-2008 - 21:18 - from c-24-18-26-123.hsd1.mn.comcast.net
Thank you for this website. I had AFLP in May of 2006 when my second daughter was born. I was told that AFLP usually occurs in first time pregnancies though. I had my first daughter in 2003 with no problem. She was born two days before her due date after only 5 hours of labor. I had her all natural with no drugs, she latched on right away and I breastfed her until age 2.5 when I became pregnant with my second daughter. After my first birth I felt like I could do anything. My biggest fear when I became pregnant with my second daughter was that my labor would go too fast I would deliver in the car or at home. The pregnancy was different but I chalked it up to being a second preganncy and my body just being different now and having a two year old to take care of. Around my 33rd week I started to feel sicker and sicker. I thought i had the flu. I was lethargic, and had no appetite. After the first few days I stated calling my midwives office and then said if I started throwing up to come in but I probably just had the flu. THen I got to the point where I couldn't get off the couch. Going to the bathroom was a like running five miles. I called the morning of my next schedule appointment and asked to come in early and doing that is part of what saved our lives. My sister took me to the appointment at 11am where I was sent to the hospital becasue I was in labor and dilated to 4cm. I was in so much pain from the AFLP that I did not realize I was in labor. My midwife thought I needed an IV for dehydration.
After getting to the hospital I only remember flashes from the first 3 days. I had an emergency csection at 1pm because they did an ultrasound and found that I was having an abruption. If I had waited until my scheduled appointment at 2pm I would have abrupted at home and my daughter and I would have both died. The hospital had never had a case of AFLP before. They did the cesction no realizing that I was in liver failure. I was in surgery for several hours while they tried to get my bleeding under control. I was sent to the ICU still bleeding. I remember being soooo cold and later was told that I was bleeding out as fast as they could defrost blood and get it in to me so they were not warming the blood more that the minimum they needed to. On the late night of the third day I was airlifted to the University of Washington Medical Center. I spent a week in ICU there and then a week in the maternity ward. THe ICU they put me in is one that they sue for transplant patients. I experienced liver and kidsney failure. I also had pneumonia and a paralytic ilus (my intestines did not work for 10 days and I had to undergo very unpleasant procedures to get them going). I was so yellow and weighed about 40 pounds more than the day I deleivered when I left the hospital after 2 weeks. My daughter was born healthy and big for 35 weeks. She weighed 6 lbs 15 oz (my first daughter was over 8 lbs at full term, we have big babies in my family) SHe had a feeding tube in her nose for a while but was released from the hospital the day before me. We were separated for the first two weeks because I was sent to different hospital and I did not breastfeed. I grieved the loss of those days and the experience of breastfeeding her. I went through post partum despression and sturggled with how to go through everyday after almost dying. I am grateful to be alive and believe that it was only by the grace of God that I am here today. Someone asked me if I was going to sue my medical provder and i thought this was ridiculous. They had neer seen anyone with AFLP and it is so rare. I have had friends use the same providers since and found out that they now call moms who report feeling flu like symptoms to follow up and see that they are getting better. I think that the awareness is all taht we can ask and needs to get out there.
After my second daughters birth my perspective is now that God can do anything and that He can give me the strength to do anything that He wants for my life. This morning my daughters are watching soccer and playing dress up. I am blessed. God kept me here with them to raise them into the women He plans for them to be. I still get down sometimes but I think I face things more head on now, I used to put up a good front when things were not so good and avoid problems but now I have little tolerance for facades. In the hospital I was completely exposed and vulnerable and something about brings freedom when you face it.
It is really wonderful to hear others stories and know that I am not the only one. There is so much out there that is just clinical stuff on the internet that doesn't help with understanding the emotional part of AFLP. Thank you sharing and giving a place to share. My heart and my prayers go out to you who have lost a child through this illness. I realize how blessed my daughters and I are can only say that I will honor your children by remembering them every time I get frustrated or am tempted to complain about anything. Thank you again for this website. |
Amber Moured
 ambermoured@yahoo.com
 http://www.acutefattyliverofpregnancy.com | 15-06-2008 - 14:44 - from 52.sub-70-208-29.myvzw.com
I was diagnosed with acute fatty liver of pregnancy in October 2004 when I delivered my one and only son. My pregnancy was terrible, experiencing many of the signs and symptoms of AFLP. However, everyone thought it was just a "normal" unhappy pregnancy. I delivered at 38 weeks and my son is absolutely fine! What a miracle! I was in critical care for about a week and the recovery period was several months. I would love to have another child, but am scared that it might happen again. I am going to be 40 in January and the risk factor increases as you get older anyway. I am blessed that I am fine now and my son is happy and healthy. I think about this often and am so happy to have found such a website. I sympathize with many of these women and wish them the best! |
Charity Ruth Moran
abieandcharity@yahoo.com
http://msn.com | 08-04-2008 - 11:55 - from cpe-76-175-78-23.socal.res.rr.com
This was an awesome idea for you to have thought up!! I suffered from AFLP in 2005. We had just had our second child in January and became pregnant soon after with Isaac. He came to us 10 months later (November) at 32 weeks. It was a roller coaster of insane emotions. I knew my body was going through dramatic and extreme hormonal shifts, but physically it was much more. I was always very sensitive to my husband's touch when he wanted to have sex or simply intimately caress me. It hurt him so bad that he thought I was unfaithful to him. The memories of his Ex's affair "haunted" him and he let our experience mimic his past. He quickly compared me to her and felt I was rejecting him. I was not. I would tell him that I needed him to just hold me; I needed to feel pyhsically secure by being wrapped up in him like a baby and I had to be covered from head to toe with fitting clothes...bra, socks and all to bed. I could not dare wear loose clothing. At about 29 weeks, I became increasingly and overwhelmingly so tired that I could easily "pass out" (nap) once I hit the floor. I had virtually no energy. I also at one point felt like I was dying...worse than having the flu. Finally, the morning I was due to go to work, I was experiencing palpitations. I was not anxious, nor did I think I had any prior stress that might have caused the palpitations. My boss was not too happy and later it cost me because I had decided to go into evaluation (Labor and Delivery) instead of going into work. I always say better to listen to your body and go with your instincts just to be safe. Well, I am glad I did because after the staff ran blood tests, it was discovered that I had renal, kidney and liver failure. My numbers were sure off and before my doctor showed up, I was told that they had to deliver in order to stop what was going on with me. I still was not coherent on what was going on but I wasn't exactly nervous just yet. I just remember having extreme chills and shaking uncontrollably. It wasn't until my own doctor chowed up along with the rest of my family that I realize how serios this was. She said. "OK folks, I'll be frank with you, Charity and her baby have a 50/50 chance at this. So, we are going to do our job and hope for the best. Than I saw my family crying...that's when it really hit me. I had praying for God to take my life because my husband had such a hard time supporting me through this pregancy and I struggle to prove to him that he was with me not his ex-wife and that I knew what was wrong with me ... I just could not control it. I also struggled so hard at trying to prove to him that it wasn't him (that was "disabling me to be active")...it was the shift in my hormones. Every next piece of the puzzle finally fit the puzzle at the end. I finally was able to figure out why I had experienced such a difficult pregnancy. I was also urinating more than the average and had deathly dreams. Oh and then there was the bleeding throughout the pregancy; One of our speacialists thought we might had been pregnant with twins and lost one.
As I was going into the operating room, I literally felt that God was "offering" me my way home as if to say, "This is it. Do you want to stay or go?" Contrary to what I had previously wished, I ended up replying, "I'll stay." I thought it might had been selfish of me to leave my husband to care for 6 kids (he has 3 from his previous). Other than his murmur and hole in Ihis heart and his initial short-lived kidney malfuntion, Isaac Elway seems to be a happy-go-lucky active 2 1/2 year old. He has his cardiac follow-up in 2 weeks and his echo-cardiogram in November this year. In the mean time I pray for his continued health and happiness and thank God for His blessing to us. |
Mimi
mimih1313@yahoo.com | 25-02-2008 - 20:39 - from adsl-153-62-175.chs.bellsouth.net
HI! I was so glad to come across this site. I know there was a need for one and I commend you for starting it. I had AFLP with my first son who is now 6 years old. It was a very scary time, but we both survived. It took quite a while before they diagnosed me. I was a few hours from having a liver transplant when they discovered that I had an infection as well. Once they started treating the infection, my liver started to function again. Anyway, I had a happy ending. I have had another pregnancy since with no complications- another boy. If anyone ever wants to contact me for information, I would be happy to help in anyway that I can. |
| Grandmother (Kaye) | 31-01-2008 - 20:34 - from nc-67-77-142-5.sta.embarqhsd.net
Thanks for this opportunity for others to hear about AFLP. Our daughter almost died after finally finding Duke Hospital and a doctor there who knew what was wrong. A 3lb. 7 oz. healthy little boy was born and is now part of our family. He is now 6 years old and our daughter and her husband decided they wanted another child and we now have a healty granddaughter that is almost 2 years old. Our daughter had both of the children by c-section and was in intensive care for almost a week the first time, but did much better with the second delivery, thanks to the wonderful care of her doctors at Duke Hospital. Hope this is an encouragement to others who are going through this difficult time. |
Denise G.
denise@nantucket.net | 08-01-2008 - 05:02 - from c-24-128-24-221.hsd1.ma.comcast.net
Hello, I registered yesterday, recieved email confirmation today, but am unable to login. Also, tried to email you through the Contact Me page, and your email was rejected...Would love to be a part of your site.
Thank you for your work in promoting awareness of AFLP, and providing Moms a place to "talk to" other Moms who have experienced it.
Best,
Denise |
Sherrie L'Heureux
shers33@cox.net | 19-11-2007 - 03:30 - from ip72-196-30-210.om.om.cox.net
Finally after 18 years I am able to connect with others who have suffered from AFLP. I realize that Alex, my daughter and I are miracles. I had all the same symptoms as many of the women, however I delivered Alex vaginally and was not diagnosed for 3 days very close to death with renal failure, blood sugar complications and had a D and C performed 18 hours after delivery which complicated things more. I often feel like I didnt get a chance to bond with Alex due to our illness. She had a case of "wet lung" but is very healthy. we have had a very strained adolesence tha t I blam e some on the bonding issue. Things are improving and I thank Alex for coming early at 36 weeks to saving both of our lives/ Thanks for the chance to share! |
Karin Kayfes
karkay1103@msn.com | 17-11-2007 - 05:23 - from 71-215-134-100.ptld.qwest.net
I am glad to find this site. I have done a lot of reading online about AFLP since I had it in 2002, and found some information, but nothing like this. Thank you for giving us a place to share our stories. I had a pretty normal pregnancy. I was on heparin the whole time, due to a blood clotting disorder that I have, but other than that, felt well throughout the pregnancy. Then at about 33-34 weeks, I started getting bad heartburn and felt my energy level dropping. I was lucky to be under the care of a perinatologist, so I was being watched closely. It was noted at 34 weeks that my amniotic fluid levels had increased quite a bit. Then at 36 weeks, I found out I had gained 3.5 pounds in a week, after weeks of gaining nothing. I started feeling awful. At 36.5 weeks, I started vomiting, some of it blood. I felt sore all over, as if my flesh was all bruised, and I had a rash on my chest and back. Much of this was chalked up to early labor (I was having contractions). But after being this sick for 24 hours, I realized I hadn't felt the baby move in all that time, so we went to the hospital. My baby was having decels with the contractions, and they said I'd be having a c-section. But the doctor was puzzling over my symptoms- he wanted to know what was wrong before he operated. But then the baby's heartrate dropped and stayed down. They did an emergency c-section, and when they got my bloodwork back, they determined I had AFLP. My liver and kidneys were failing. I was given plasma and vit. K. My son's Apgar was 1 and he had to be intubated. Fortunately, we both improved pretty quickly, and I was out of the ICU after two days, and my son was released from the NICU after five days. We were in the hospital for about a week altogether. My liver functions weren't totally normal, but improving steadily. My son is now five, and healthy, except he still has some lung issues (prone to pneumonia). It was amazing that I didn't have more bleeding issues, because the heparin I'd been taking wasn't metabolizing in my liver when it failed, so it had really built up and my clotting time was extremely high. I am 15 weeks pregnant with my second child, and again under the care of a perinatologist. I'm terrified of a reoccurance, but have been reassured the chances are pretty low. |
lisa
lisacripps@btinternet.com | 02-11-2007 - 13:37 - from host81-155-242-116.range81-155.btcentralplus.com
Hi i only recently found this website on AFLP i am so glad i did. I had this experience in may 2002. This was my 2nd pregnancy but my 1st was to a different partner and was a girl. I didnt enjoy my 2nd pregnancy from the start was totally different from my 1st which i sailed through. I got to 33 weeks and fell really ill couldnt eat and took to my bed with severe heart burn. The doctor was called and told me it was possibly a water infection and gave me anti biotics, three days later i was no better and the doctor was called out again, he told me to go straight to hospital all i remember then is a doctor at hospital telling me i had to have an emergency c section and maybe a hysterectomy i didnt care i just wanted them to save my baby they at this time where not really sure what my problem was. I awoke 6 days later in the Hdu unit with no memory of where i was or what was going on. I found out that my condition hadnt been known nobody new what it was but luckily for me a nurse who had seen this case 7 years before suggested i be tested for AFLP. My son was born 5 1/2 weeks early weighing 4lb 10 he was put into an incubator and spent the 1st 6 days in scubu with my family and nurses looking after him he luckily was fine and has been since thank god. For me after having the c section i started bleeding badly my liver was failing along with my kidneys. I was taken back into theatre and had to have 20 units of blood put back into me and was put in intensive care with my licer failing as well as my kidneys so i had to have kidney dialosis. My family where told that i was not going to make it and told to say their goodbyes to this day that breaks my heart and if it was not for them i dont think i could of got through all this. Luckily for them and me i did it was a battle after waking, learning what had happened but eventually i was sent to the maternity to bond with my baby where i remained for a couple of weeks. I couldnt walk properly and eveything had to be done for me and my baby, the nurses where brilliant. My doctor had told me that this case was very rare and at the time there where only 40 recorded cases in the world he had to research it on the internet and apparantly i was his longest patient he had worked on, 16 hrs i suppose is a long time this man was amazing and if he hadnt been i would not be here, i feel, today. It still upsets me to this day to think that my son and daughter could of lost there mum. During my after care i was told that as AFLP was so rare and not enough was known about it at the time that it would be better for me to be sterilised in case this ever happend again which i did. I am so glad that this illness is being recognised now as research now shows that mothers can actually go on to have other pregnancies with the right care and also that us AFLP sufferers can share our experiences. x |
Nicola
nicolastephen12@yahoo.co.uk | 16-10-2007 - 15:17 - from no-dns-yet.demon.co.uk
After watching This Morning on the 15th October my terrible experience from October 2004 came flooding back to me and I have been reduced to tears on a number of occasions by just thinking about what happened to me. I stop myself everytime I think of all of you who lost your babies. I am one of the lucky ones who, after a bit of a shaky start, are healthy. My son Lucas has just turned three and he too is healty. Never a day goes by when I don't think about how lucky we are.
My pregnancy had been entirely straightforward, in fact I often said to my husband how fantastic pregnancy was and that I didn't know what everyone else moaned about! That was until the day I finished work at 35 weeks. I was looking forward to preparing for my baby coming but was unable to get myself off the sofa most days. I was miserable, I was had itchy swolen feet and hands and I couldn't keep any food down. I phoned NHS 24 and they said that if I continued being sick or if anything else changed that I should ring back. I started bringing up blood withing the next few days but I still wasn't particulalrly worried. I just felt that I was being a bother to people. I decided that seeing as I was going to be visiting the hospital that I was due to deliver in for my last Ante-natal class for the "hospital tour" that It wouldn't do me any harm to get checked out while I was there. The doctors there ran some test, thought I was fine (they didn't do LFT's) but said they would keep me in overnight just to make sure. During the night I couldn't sleep, I was having pain in my back that felt a lot like period pain so I asked the midwife for a hot water bottle. She said she coldn't give me anything so I just persevered. A few hours later I couldn't take the pain any more, I stood up to go and get the midwife and was met my a huge rush of blood all over the place. They rushed me down to the labour ward to monitor me. While I was there there was a Doctor who had seen a case of AFLP a few weeks before, he noticed my symptoms immediately (Thank God!) I was rushed in for an emergency C-Section where the consultant told me I was 8cm dilated. I don't really remember much after that. I saw my baby briefly then was taken to ICU and was kept there for 2 days in an induced coma (to let me recover as best a possible). I wasn't sure if I had had a baby or not, I couldn't remember anything. My baby was kept in another hospital and his Dad and my family tired themselves out by tending to the two of us over the next few days. I was eventually transferred back to the original maternity hospital where I was kept in the labour ward for another week as no-one knew how to take care of me. When eventually transferred to the ward with other mothers who had just delivered none of the midwives wanted to deal with me as they felt that I should be under the Health Visitors care (which normally happens after day 10 when most mothers are at home). I felt alone and helpless. If the midwives had had more information and were more aware of the seriousness of the condition I am sure I would have recovered much quicker. I went home after 16 days where I made an immediate improvement. I had to plead with the doctors to let me out. I still feel frustrated that I don't remember one of the most important days or weeks of mine and my babies life. Thankfully he won't remember that I wasn't there for him in the beginning. I am now well and am looking forward to hopefully trying again for No2 soon. Your stories have convinced me that all could be ok this time. One final thing that I must say is that these experiences are hardest for the Dad's who feel helpless to their Wives and Children in such a difficult time. We must thank them too. Nicola |
Liz
lizadie@hotmail.co.uk | 11-10-2007 - 12:58 - from 87-194-218-5.bethere.co.uk
Your website is fantastic, and I think you're doing a wonderful job in raising the profile of AFLP. I have watched all your videos, and am looking forward to seeing you on 'This Morning' on Monday. If I can get through, I'm going to phone in with my story.We lost our son, Arthur James, at 32 weeks in June this year. I had suffered many of the symptoms that many of the other ladies who have mailed you did, and spent the fortnight before his 'birth' in bed, nauseous, unable to eat, aching, weak, thirsty and feeling generally rotten. Within the last week I visited the hospital, phoned my doctor, visited the NHS 'drop in' centre and saw my midwife, all of whom were sympathetic, but who said that unfortunately these were the symptoms some women suffer in their third trimester. As a first time mum-to-be, I had to take their word for it. I ended up having a massive placental abruption in my bed. I lost so much blood that I fainted, and I only thank God that my husband was there to call the ambulance.By the time we got to the hospital, I knew that Arthur was not alive, and the doctors confirmed it. From this point on, I like you, felt like I was in a bubble. I knew that things were going on around me, but I didn't feel like I was part of what was happening. Even when I held him, I wasn't really aware that he wasn't alive, or that he was my baby. I felt like I was looking at a perfect little sleeping baby.After the caesarian operation, I blew up like a huge jaundiced balloon, and had to have another operation (re-opening the scar) to remove a massive blood clot. I made a speedy recovery, and was able to leave hospital a fortnight later.The doctors were unsure about a diagnosis at first, but I have now been passed from Obstetrics department to Gastroentorology, where the doctor has confirmed AFLP advised me against furure pregnancy.Having read up on the condition, and read about people's experiences on your website, I am confident that if we were to try again, the chances of the condition recurring are unlikely, and that I would be monitored closely. I just wish that more people had known about the symptoms at 'grass roots' level: midwives and doctors, so that maybe this terrible tradgedy could have been avoided. I really admire the work you have done to raise the profile of AFLP, and thank you so much for your strength, hard work and determination. You're an inspiration.
Liz
xxx |
val
val.mayers@tesco.net | 09-10-2007 - 14:16 - from 89.242.167.160
I am sitting at the computer with Thomas on my knee. He is 19weeks old. He was delivered by emergency section as I had aflp. I have got 3 other children so being ill in this pregnancy came as a shock. It has helped me to read everyones experiences as it is so rare. The hospital where I had Thomas were great but my own GP not so good so going to change.
Val xxx |
Melissa
mjautaikis@verizon.net | 28-09-2007 - 06:54 - from pool-71-243-202-234.lax.dsl-w.verizon.net
Hi, my name is Melissa and I am 28 years old. When I was 22 I was pregnant with my son now 6. Other than having extreme morning sickness, I had a very uneventful pregnancy. Very by the book. When i was 34 weeks pregnant with him, I went into my doctor for a check up and was told that I had a bladder infection. The next morning I woke up with extreme back pain. I initially thought that I had a kidney infection related to the bladder infection so I called the on call OB. He kind of blew me off and told me to take some Tylenol and call him back in an hour. After an unbearable hour past, my husband called him back and told him that I was unable to get away from the pain. I had been curled up in a ball, rolling back and forth from one end of my bed to the other. It was unbearable. Finally, he said to go in to our Acute Care facility, so we did. One look at me at the door when i arrived in Acute Care and they sent me to Labor and Delivery. When I arrived there, they put me on monitors and i was contracting about every 5 minutes. They put me on Magnesium Sulfate and that was miserable. My son was sitting on my kidneys and they were not filtering out the Mag and i was now getting toxic. I was seeing bugs crawling on me. People would ask me questions and I'd answer them 5 minutes later thinking that I was immediately reacting. They did ultrasounds of my kidneys and saw no real problem. It was a waiting game, they just wanted to keep the baby in a little bit longer. Later on day 4(I think), when my nurse came in to adjust my monitors and do vitals, she saw on my stomach petiquei bruising all over my abdomen. Also, my liver was distended. Immediately, everything changed. No more trying to stop the labor, let's kick start it. The only problem was that I was overloaded with Mag because my body wasn't eliminating it. Finally, after quite a few hours of labor, I had my son matthew. He was born at 34 weeks and 6 days. He was 5#9oz and 18 1/2 inches long. He was in respiratory distress and within 24 hours intubated and transfered to a different hospital with a better equiped NICU. He was in the NICU for 2 1/2 weeks and it was tough, but we were very lucky. There were much sicker babies than mine there. Later, I asked my doctor what in the world happen and he said that I had had acute fatty liver.
At my postpardom appt, I asked lots of questions and he assured me that Acute fatty liver was incredibly rare and the chance of reoccurance was less than none. He told me that he would follow me closely through out my pregnancy, doing liver panels and other labs, if I chose to get pregnant again. So we decided to get pregnant again about 2 yrs later. My second pregnancy was uneventful and easy. My third baby was induced due to my liver function tests began to change and my doctor was confident that if I carried her any longer, I would repeat my first pregnancy. Anyway, all of my children are healthy. My son is 6 and in kindergarten and my two girls are doing well also. I am grateful for an amazing doctor who took great care of me.
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| rochelle | 11-09-2007 - 23:05 - from 82-38-185-212.cable.ubr03.shef.blueyonder.co.uk
11/09/2007 (engalnd) i would like to say as all of you seem to feel that it is so nice to find a site were other people have suffered from aflp as it is so few and far between getting people to understand it and reading from the basic research on it gives you little information. After reading your stories i knew i was lucky from the information i was given but i didnt realise how lucky, my heart goes out to you all especially those that have lost their babies through this illness. I was 34 weeks in gestation when i started to become ill not eating well, always thirsty aswell as lathargic, as most of you i put this down to late pregnancy niggles, this was my third pregnancy and the first two were pritty much textbook. By week 36 i was bed ridden so tired, i went to see the doctor on the monday who prescribed me with gaviscon for acid as i couldnt eat, on tuesday i went again and was given a different anti acid as i still felt really ill. On wednesday i woke up felling extremley bad phoned the doctors straight away crying for an appointment by this time i had resorted to sucking on ice cubes for water as i couldnt do anything else. whilst in the waiting rooms contractions started i saw the doctor who said i looked a bit yellow in the eyes and said make your way to the hospital as soon as you can for a check up. With the contractions growing in strength i went straight away, all the time i kept saying to my husband i dont think i can deliver the baby i feel too weak. Once at the hospital i saw a midwife and was said to be 8cm's dilated they took me down to the delivery room and put on monitors i was just crying i knew i couldnt do it. The next thing buzers went off and lots of people ran in and i was told i was going to theatre, i went into the room and thats the last thing i remmember. I had an emergency c-section and liver scan and taken to intensive care. I came round on the friday and found out i had a son who was well but slightly jaundice, but then id forget again. i was in hospital for two weeks and was told i was 1 hour away from dying, luckily my liver regenerated itself. I was so strong mined about it but the thing i find hard to cope with is the lost time with my son. The hospital staff were brilliant and tried to give me as much information as possible searching the web for answers for me. As you all seem to be told that a furthr pregnancy could have the same complications infact a 20% chance. we decided not to have any more and my husband has recentley had a vesectamy. my son is now 4 months old and seems fine i have made a full recovery physically i think the mental recovery will take alot longer, i wish to thank this web site for giving all us who have suffered from aflp a chance to share our storys with others that can relate and give us strength to deal with all the different outcomes that we have all faced especially those who have lost their precious little ones. x |
Nicole
nicole.barcsik@accesscomm.ca | 09-09-2007 - 20:34 - from static24-72-50-54.regina.accesscomm.ca
How wonderful it is to find your site, now I don't feel so alone. In 2005 I had an emergency c-section at 32 wks due to AFLP. My son weighed 4 lbs 12 oz and did very well right from the start. He was in the NICU for 1 month and I was in the hospital for 2 wks. I went into labour and was turning yellow, thankfully the ER doctors recognized it was liver related knew a c section would save our lives. I got plasma and vitamin k shots to help blood clotting. I don't remember much about the first few days and didn't even see my son for the first time until he was four days old. The pregnancy was pretty stressful with spotting off an on, nausia the entire 7 months, high blood pressure startiing in the 2nd trimester and later extreme itching. I only wish my GP would have been more informed so I could have received treatment before things became so cirtical A few weeks before I delivered I complained to my doctor about nausia, extreme itching and feeling something wasn't right. She told me I had a virus and that my high blood pressure was due to me worrying too much and if I kept it up I might lose the baby. Looking back I should have insisted she look into things because I KNEW something was wrong. Since the birth we have had genetic testing and were thrilled to find out we did not have the LCHAD deficiency. They told us chances of reoccurance would be between 1- 5 %. An ultrasuond did show some scarring of the liver though. We are doing great now, my son is a healthy 2.5 yr old and we are now 9 wks pregnant with twins. I am so very scared of reoccurance especially since there are two babies in there. We do lots of praying and have switched to a doctor who is monitoring things very closely this time. I am so glad to have found this site, it is expecially comforting to read about successful 2nd pregnancies. Thank you for giving me a place to share my experience and for all the information on your site. |
Jennifer
heath_585@hotmail.com | 09-09-2007 - 18:39 - from bas4-ottawa23-1088826609.dsl.bell.ca
I am so glad to find a site where other women know the pain. I was 36 weeks when they found out i was having liver failure and diagonsed me to have aflp . But the fight was on . I went into the hosp on aug 4, 2005 wher my ob told me I was having early labour . I(I don't remember being there ). The next day my Fiance told tem he wanted a second DR to look at me . He was told to go to Ottawa. And he took me (i don't remember) . there i was diagonsed with aflp. On Aug 6 2005 they did a c-section on me and I went into a coma. I woke up 6 days later with a son and i didn't know his name , where I was, or when he was born . I was very upset for a long time But I knew I had to move forward in my life to raise my son. . I thoughts and Prays go out to all of you who lost your Baby . I hope one day they learn more about aflp . |
Linda
jllisiewski@yahoo.com | 06-09-2007 - 17:06 - from c-68-39-91-67.hsd1.nj.comcast.net
So happy I found this site! I'm so sorry for those losses I have read about. Such a devastating thing to endure. I had AFLP with my son in October 2006. I was almost 39 weeks along when I started having problems eating and feeling fatigued. After 2 days I called the OB and they sent me to the hospital. I delivered my son that night and he was fine thank God. I spent the next day in ICU and recovered slowly but surely. It is so hard to find other people who have experienced this. I'd love to chat with anyone who's interested! |
kayla
kayladelvalle@yahoo.com | 05-09-2007 - 06:11 - from 74.197.104.123
Hello,
I also experienced AFLP. I didn't have a normal pregnancy at all. This was my 2nd pregnancy the first ending in a miscarriage @ 12 weeks. This pregnancy I was sick the entire time. In and out of the hospital with severe dehydration. My doctor pretty much gave me phenegren and said it's a part of pregnancy. So about 24 weeks I moved to a different town and had to switch doctors. It was a bigger town and harder to get in to see the Dr. Anyways about 32 weeks I got extremely sick. I couldn't keep a single thing down for over a week. I called my dr. constantly but all he did was suggest things to calm my stomach (popsicles, crakers) none of it worked. He said as long as I felt the baby and was still able to have urine output I was fine. So after a week of this me and my husband went back home to visit some family. We traveled @ night and when I woke in the morning I couldn't stand up, I felt so light headed and dizzy. They took me to a small hospital where they tried to say I was just having a panic attack and gave me meds to relax me. I was kept overnight and the next morning my liver and kidney levels where extremely off. I was taken to a little larger hospital. The whole time I was still kind of out of it due to the pain meds and stuff, I was not told much only that I would have to deliver ASAP either there or they would life-flight me to another more equiped hospital. I ended up delivering less than an hour later. A healthy baby boy 3lbs. 14 ounces. When they did his physical they determined the stress from my body must have made him mature faster. ( I had just had an U/S about 2 weeks before that showed me as 31 wks.) His body was that of a 37 wk. fetus. It was truly a miracle. He was on oxygen and the feeding tube for only a day and slowly taken off. As for me, I was very tired and my body had been though so much I was still very week, but as for my liver and kidney I had no lasting problems.My enzymes went back to normal within a few days. My son stayed in the nicu for 2 weeks and then released he didn't even weigh 5 lbs yet. I was not told of the extremity of the condition I was in until later and even then they didn't have very good answers for me. I felt confused yet knew my life and my sons was a miracle (especially after reading what you and your families have gone through. I still have many questions about AFLP that I can't seem to find the answers. I know have another son, (18 months) My doctors where very skeptic and wanted me to abort the pregnancy but there is no way I could have. My oldest is 3 now and it seems that word about AFLP is finally getting out there more. With my 2nd pregnancy I was still sick constantly (morning sickness..24*7)but had no sign of AFLP.My doctors had pressured me to get my tubes tied blaming it on the risks of AFLP, but now I am finding that each case only happens in the 1st pregnancy and almost always in the last trimester. I am so thankful for my boys, yet deep down I feel I was given false information...I am now 22 and cannot have anymore kids and I read articles that go against everything the doctors told me. I only wish that this information was out there a few years ago. |
Helen
helengains@hotmail.com | 01-09-2007 - 17:22 - from 5acbeec3.bb.sky.com
I too suffered with AFLP back in 2005. It started at around 28 weeks when i informed a student midwife that my hands were going numb, "she replied oh dont worry most people get this, it will only get worse" well related or not little did i know that it was going to go so wrong. My pregnancy was fine all the way through. I did get gestational diabetes but this was controlled through diet. My AFLP was no diagnosed until after delivery. On the eve before i started to get bad stomach pains and didnt notice the baby move as much as usual. I went to the hospital and they checked me over and told me i was not in labour. (well this i knew as i was 36 weeks) they then decided to keep me in and induce me as i had been diagnosed with OC. It wasnt until the morning when they took the babys ob's that they realised his heart beat was not right kept going up and down within seconds. They gave me an emergency c-section. Everything went well baby was delivered - he was fine. I was taken to recovery only thing is 15 hours later i was still there not coming round and getting bigger with fluid retention. I was taken to HDU had liver and kidney failure, and my body was starting to shut down. I did not come round until the monday, my son was born on the wednesday. I was told that i had HELLP syndrome. By the next wednesday after test they decided to take me to surgery as my wound was not healing they needed to re-clean and staple together. By the evening test results they had discovered that my blood was not clotting and i was having a massive internal bleed. Not easy being told you are going to die if they do not perform. This was done. Thankfully this time things had gone better. I started to get on the road to recovery slowly. 2 weeks after being in hospital my organs had started renewing thereselves. The only thing i had to deal with was an open c-section wound. This took 3 months to heal as it had needed to heal by secondary intent due to the amount of times it had been open. Thankfully to say i am one of the lucky ones my son is now 2+ and i am well. I have yearly liver tests and they seem to be ok. Only thing is now i would like to have another baby but am totally scared of what i will be faced with. Love and best wished to all. |
monica dodd
monicadodd05@yahoo.co.uk | 09-08-2007 - 13:14 - from 62-30-138-151.cable.ubr06.wiga.blueyonder.co.uk
09/08/07 I to suffered AFLP with my first pregnancy. I'd had a healthy pregnancy . I had reached 36wks and i was presented with gestational diabetes. Two extra scans were given, to make sure my baby wasn't putting on too much weight. The chart showed him to be a long baby. With me having gestational diabetes the consultant said that delivery would be opted for around 38wks. I was given insulin for 2wks and an appointment was made for Monday 11th June. Around this time i was drinking alot, and passing urine alot too. We just thought that my baby was lying on my bladder.The weekend before the appointment i had been sick a few times, i called the emergency doctor who prescribed gavisgone for the heartburn, he listened to my baby's heart, which was ok. On the 11/06/07 after seeing the diabetic consultant, i was sent for review on the delivery suite at Wigan Infirmary. My baby's heart was monitored via a belt around my abdomen and i found that he was in distress. I had to sign a consent form as they though I'd bleed to death. I was taken for an emergency caesarian. I was in total shock. Jack was born on the 11/06/07 @ 3.48p.m with a prolonged resucitation, and then transferred to the Neonatal Unit. After agonizing hours waiting for the doctors we were told that Jack had suffered Hypoxic Ischaemic Encephalopathy (lack of oxygen) We agreed to have him baptized that night. Seeing my baby boy on Neonatal Unit was the hardest thing, he was so big compared to some of the little ones. I was in disbelieve how and why was this happening. Jack was receiving 100% oxygen. I still hoped for a miracle (I would of cared for him no matter what) Friends and family came to see my little boy and to say there goodbyes. After discussion with the doctors we decided that the next day Jack would be taken off the oxygen. Around 12.30pm on the 13/06/07 we were taken to a family room to spend time with our little one, away from all the machines. Nobody knew who long he would have, he was a fighter. Our precious baby Jack died 8 hours later. A skin and muscle biopsy was undertaken, these results remain outstanding. I have found a couple of sites relating to this disorder, a little hard to understand. But this one best. Thank you for allowing me to share what i have gone through.
Moinca |
Portia Smalley
psindahouse@comcast.net | 21-06-2007 - 17:32 - from c-76-23-103-232.hsd1.sc.comcast.net
I have been searching for info reagarding this diasese for a long time. Dec. 24, 1999, I went to the hospital after being extremely thirsty and not being able to hold any food down. My Dr. said 4 days prior I had a stomach virus & would be fine, since the baby was fine & I had been fine, healthy all through the pregnancy until then, the baby had turned and was ready for delivery. At the hospital the baby had turned back around, and passed. I was only 2 weeks away from delivery (about 32 wks). They didn't know what was wrong, but I had to deliver the baby the next day. They couldn't do a c-section, since my blood had no clotting factor and I could bleed to death. The day after delivery my husband noticed my eyes were very yellow. They rushed me to COU in the hospital, where the fight for my life was on, and no one new why. I was in the hospital for a month. They concluded I had AFLP. I had no diabeties. I am in the US, and they didn't have any info in regards to this diasese other than it occurs in 1 and 1500 women, 75% of mothers pass with the baby, or the baby is born and passes before age 2, and the cause is pregnancy and cure delivery. No one could answer our questions. We had an autopsy done on the baby, and nothing was wrong with him. I was so dehydrated when I got to the hospital that my skin looked like an alligator, and I had no amniotic fluid. God is the only reason I am here today. He Blessed us in 2001 with a baby boy. I was under high risk, and had a c-section done at 32 weeks to insure no problems, even though they said it doesn't useually occur with another pregnancy. This is the first thing I've been able to find in regards to this diasese since then. I have wanted to speak with anyone that had experienced this. Although I don't want anyone to go through what I did. Some of you had it far worse than I did. However, any loss is a loss just the same. GOD BLESS all of you!! Thank-You for this site and allowing me to share some of what I had gone through. Please feel free to contact me. It helps to talk to someone who has experienced what I did. They should be able to do tests to ensure this doesn't happen. I don't feel it should happen. Thank you for listening. My prayers are with all of you!
Portia |
Giraudeau Brigitte
brigitte.giraudeau@fr.issworld.com | 14-03-2007 - 15:49 - from 212.234.57.18
Il faut que je prenne des cours d'anglais pour comprendre tout, mais ce que je sais c'est que je suis fière de toi, bravo pour ta force et ton courage. Bisous. |
carrie
carrie.moore@swansea.gov.uk | 07-03-2007 - 13:52 - from 212.219.233.158
Hello,
I have been searching high and low to find someone who also has suffered with AFLP. I had a single baby last year who passed away as a cause. I had no warning signs at all and noone picked it up. My son saved my life by coming early. I love in the UK and the figures are scary over here and the doctors do not have that much reasearch on it.
Carrie |
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