Topic : 04/12 Twin Tug of War

I just had to post to say  "thank you" for bringing attention to HG as well as the effects it can have on its sufferers, including the friends and family involved. 

I am in the midst (18 weeks along) of a second HG pregnancy.  I've had four hospital visits for rehydration and treatment, Zofran since week 7, and this past week learned the excessive vomiting had caused a hernia and abdominal muscle separation.  And my HG is a very mild case!!!  I've spent many days crying on the bathroom floor, struggling to take care of my two year-old, and overwhelmed with the guilt of knowing I'm not the mother/wife I was and want to be.  I find myself too weak to function many days... there have been days that I'm sooo incredibly thirsty and starving, but can't even manage to swallow any drinks or nourishment.  Imagine having the stomach flu or food poisoning for months on end?  Can a person in such condition really be expected to make any logical decisions?  Or be capable of looking after themselves?  Forget working and managing a household... it's impossible. 

The sympathies of friends and family wear out quickly.  I can't tell you how many times I've been told "Oh, so sorry to hear you are one of the unlucky ones with morning sickness... have you tried ginger ale and crackers???"  This is more than simple vomiting... for me, it has meant constant vomiting/nausea, dehydration, rapid heart rate, shaking, weakness, constant lethargy, hot/cold flashes, and now the hernia/abdominal issue.  It's more than not keeping meals down... there's blood, bile, and more yukkiness than I had ever experienced before pregnancy.  And to those who think it's psychological... for many HGers, the symptoms began before we even knew we were pregnant, myself included.

I was not an unhealthy woman.  I was fit, walking miles and miles a day, trim, and on a very balanced healthy diet.  I began prenatals six months before conception and had a preconception check-up and labs before even considering a second pregnancy (due to my previous pregnancy and experiences with HG).  Despite my good health and best efforts, HG struck again.  I lost 10% of my body weight by week 7 of this pregnancy.  I couldn't stand up without making myself ill.  And the Zofran, while it helps, certainly did not put an end to the nausea/vomting. 

But the worst is the lack of support and being forced to second-guess myself.  And all HGers experience this to some degree.  Marriages, relationships, friendships suffer.  Family wonders why we can't "suck it up" and deal with pregnancy like every other woman does.  I've been told "What do working pregnant women do?  If they can manage, why can't you?"  Do you really think an employer would tolerate having an employee running to the bathroom hourly???  Not to mention the fact that I barely have the energy/strength to hold my head up some days.  Yes, every pregnancy is uncomfortable, that is the nature of pregnancy... but HG is not a normal pregnancy symptom and women suffering from HG should not be expected to tolerate it as a normal pregnancy happening.

I recently read of Alison Quets story... Being abroad presently (in Australia) I had not heard her story.  After hearing of her here, on Dr Phil's website, and catching up on her story online, I feel nothing but sympathy for her.  A person with a real, debilitating, life-threatening illness should never be placed in a position to make such a life-changing decision.  To be so misunderstood and placed in such a circumstance... my heart goes out to her.  HG is so often overlooked or misdiagnosed, to think of the horrible position it places so many women in is... well, it's nauseating! 

Best of luck to Alison Quets and other HGers out there... It's a battle, but a battle worth fighting.  I have one adorable daughter to show for my first HG efforts, and soon, in four months time, I'll have another reward to hold and snuggle.  Thank you, Dr Phil, for addressing this horrible illness and helping women out there who are suffering but did not yet have a name for their disease.  Bringing attention to HG has the potential to save many lives and the sanity of many suffering already.

I'm very excited Hyperemesis is going to come out into the open.  I was 9 wks. pregnant with my third child before I finally was able to understand why I  had always felt so sick.  I'm a very small girl. With my past pregnancies my o.b.'s would get very upset with me for not eating or especially God forbid drinking water and what's up with all that extra saliva?  When I finally checked out helpher.org b/c of my o.b.'s suggestion I was so relieved I was not alone I just balled for hours (maybe minutes but it felt like hours) it was just a relief. Yet now though my baby is 7 mo. it's so hard to go in public and see women who are pregnant and living life so joyously. what's it like? Goodness after going down to 70 lbs. & now DESPERATELY trying to get that weight back you really do feel it deep in your heart for fellow sufferers. WHY US? My husband got a vasectomy for me b/c I'm scared to death of the death grip that so tightly clings to you with this stealing your happy pregnancy disease. I can't wait to see the show and root the girls on. My prayers go out to the families who have lost loved ones to this crap. To the survivors lets keep getting the word out!

I've never heard of the disease by name before, but isn't this what killed Charlotte Bronte?

I wanted to send in my thoughts regarding hypermesis.  I have watched my youngest daughter suffer twice with this horrible disease and I am so grateful that Dr. Phil is bringing national attention to it.  Her first pregnancy was just a nightmare.  We didn't know what hyperemesis was, neither of us had ever heard of it.  She started getting horribly sick around 6 weeks gestation and it continued throughout her entire pregnancy.  They finally delivered her baby at 36 weeks because she just could not go on any longer.  She had been hospitalized 6 times and I can't even count the number of trips to triage for IV fluids.  She finally hit the wall at 36 weeks and begged her doctor for an induction.  Even then she was so weak she could barely make it through labor and delivery and was even throwing up on the delivery table.  In addition to all of this her husband was deployed with the Marine Corps just before the baby was due.  Add that emotional trauma to the HG and what she went through was just unimaginable. 

 

As a result she had decided to never become pregnant again but this past November she did and about 12 weeks later the HG nightmare began again.  She is now 21 weeks and has already been hospitalized twice and has had many trips to triage.  This time she started out with a better doctor, Dr. David Dixon in Tallahassee, FL, and he has been treating it much more aggressively.  They put in a PICC line right after her first hospitalization and fortunately that has made a difference.  Currently she is taking Zofran, Reglan, Pepcid and Phenergan at night before going to bed.  He also currently has her on a 15 day round of steroids.  Fortunately she began turning a corner a couple of weeks ago and so far is doing better.  However, at 21 weeks she has already lost 30 pounds and so far hasn't gained any of that back.  She lost a total of 40 pounds during her first pregnancy.  It's absolutely amazing to me that these babies survive at all. 

 

My heart truly goes out to poor Allison.  I have personally seen the HG nightmare and what that poor woman went through defies description.  Thanks so much to Dr. Phil and his staff for bringing this into awareness.  I would also like to express my eternal gratitude to Kimber and the HER Foundation, they have truly been lifesavers for my daughter during this pregnancy.

 

 

First of all I would like say that my heart goes out to Allison Quets for her continued fight with this horrible disease long after she delivered her children. Hyperemesis is a hard enough battle to fight while carrying a little one, but to have to continue to fight and be reminded of that time is horrific to me. It is sad that so many people are not aware of this disease, often mistaking for normal pregnancy issues, and that so many women do not get the help or treatment that they need, both physically and emotionally.

I have always considered myself a stable person who has been able to handle many different issues that have come to me in my life. I was able to problem solve, communicate with my husband and felt that I had the best support system around. I am a professional who works in the field of social work, and spend my days working with abused and neglected children and fighting for their rights. I couldn't wait to "grow up" and have children of my own. My husband felt the same way and after dating for six years prior to our wedding, we decided that once we were married we would begin our family.

I became pregnant with my first child in 2004, and just like many people out there, thought that I suffered from "really bad" morning sickness. I was terrifed to put any kind of medication in my body while pregnant for fear of hurting my unborn child that was so wanted. I was hospitalized numerous amounts of time for IV fluids as a result of dehydration and given many antiemetic drugs, none which seemed to work. I was then introduced to one that is often used in cancer treatment (Zofran). I feared taking it as I thought there was no way this was safe for a baby, but I was told the risks of me not taking it and continuing the battle with what I learned was referred to as Hyperemesis Gravidarum. I continued on with my pregnancy, miserable, but wanting my little girl so badly. I managed to make it through an I now have a healthy two year old.

There were many ways that this impacted our life...as I continued to suffer physically after the birth of my daughter, we began to suffer financially from the amount of medical bills, emotionally we were terrified to ever become pregnant again although we wanted more children and even one year after the hyperemesis was gone, I was reminded of it again when I was "let go" from my job at a major mental health coorporation for not making my billing goal the year I spent most days in a hospital room on short-term disability.

Two years later, my husband and I decided to try for another child as we wanted our daughter to have a sibling and we ourselves wanted another child. I didn't think that things could be any worse than the first time, and was "prepared' to be hit with whatever was headed my way. I didn't do very much research, and was unaware of the website (www.hyperemesis.org) that has now become my main support system.

I found out that I was pregnant a week before this past Christmas, only to be in the hospital dehydrated the week after Christmas. That was the first of many hospitalization I have endured as I am only 20 weeks into this pregnancy. I have been faced with several trips for IV fluids, introduced to many different drugs treatments, poked 32 times at once only to have an anesthisiologist with an ultrasound machine be able to find a severely dehydrated vein to pump fluids in until I could undergo surgery to have a Hickman Catheter (also used in cancer treatments) placed in my chest. I spent my days and nights in a dark room, attached to TPN feedings while my husband took care of our home, our finances, and most of all, our daughter. The daughter that I was not able to pick up, hold, or run around with. The daughter that clung to my leg begging to be picked up and held. I don't know if it was her tears or mine that puddled on the floor beneath us.

The tears for me have not stopped flowing, and the once stable, able to handle anything that came her way woman, was the farthest thing from that. I wasn't strong. I was emotionally and physically weak.

I was adopted as an infant, as my birthmother was only fifteen when she became pregnant with me. Growing up, I became very strong about adoption and to be honest, was very against termination of a pregnancy for any reason. Sadly, it took being hit with hyperemesis to change my views completely on something that I was once so strong about. The strong person I thought that I was, became the person that wished I could go back to November and erase the thought of having another child. I, who wanted a child so badly, secretly wished it would all disappear. I knew that I could never go through with termination, but I thought about it daily, hourly as I sat alone getting sick into a trashcan every fifteen minutes, as I lost total control of my body and couldn't even get myself up off of the floor.

I continue to be hit with physical issues throughout, but the emotional and mental toll this has taken on me is unbelievable. I have intense fears about having this child and due to being so sick, have not been able to bond with this baby, or even look forward to having the baby. I feel horribly guilty for looking forward to August so that I will no longer be sick. I feel guilty for thinking of my sickness over an innocent baby being brought into the world. I have fears of regret, fears of resentment, fears of everything.

Hyperemesis is a disease that is not known about to a lot of people, including the professionals that we who suffer seek help from. It is the most isolating disease that I have come in contact with. I can say that even the strongest of women out there who are hit with this are hit emotionally and are faced with decisions they never thought that would be. These decisions are made under horrible circumstances and are not made rationally, as no woman faced with this thinks rationally the entire time. We often feel as though we are dying, as though there isn't a way out. We are so used to being sick, and are bodies are in such a mess (physically and emotionally) that we begin to picture our whole life in this state. We struggle with taking care of ourselves, and then are faced with taking care of a newborn, or newborns in Allison's case. With this disease being so unknown, we don't know how long it lasts, we don't know the impact of it, we don't know how are bodies will be after delivery, and we certainly don't know where our emotions are going to be.

Allison is a very strong woman to continue this battle, and anyone who has been through hyperemesis can see the love she has for her children. There are so many women who were forced to make decisions that impacted them for the rest of their lives. I look at my little girl everyday and know that she is what made it worth it. I can't imagine going through it and not being able to hug my child (children), or even have them in my care, but someone else's. I hope that Allison continues this fight and that airing this show is a first step in "Getting the Word Out".

Dr. Phil,

I don't know what brought me to your site,  perhaps it was meant to be. I am a fan of your show of course, but usually don't look at what the shows are for the week. As I was reading the story of the lady who took her twins, I saw a strange word I had never seen before...hyperemesis. Little did I know that after looking it up on the Internet, that this was something that I myself have suffered through. My doctors never gave it a name, they just said I had morning sickness and perhaps I had doubts about having a baby, or maybe my husband was pushing having a baby on me and I was internally rejecting my child! I wanted a baby desperately as did my husband. I was a dream of ours to have lots of children and raise a big family.

 

I have had two pregnancies with hyperemesis. The first ended in termination, because my doctor told me he thought it was for the best. I was so sick and being fed by a feeding tube and my insurance was saying no more. It was the worst decision of my life and I wish the doctor would have told me I could get throught it and given me the name of it so I could research it myself. The sadness I feel in my heart for the loss of this child is sometimes unbearable. But to see a story on your site about this just made my heart drop. I was meant to find this, I have dealt with in silence for too long and I am so sad to know that I could be the mother of 2 instead of 1. Why are doctors not telling these women the name of this illness? Why are doctors recommending termination?

 

I got pregnant again, thinking this time I would not be as sick.  But, I was even sicker, feeding tube again and this time the doctors were feeding me drugs I had no idea what were doing to me and my child.  My new doctor was a little better, and said he would help me get through, but also said he had never seen anyone so sick from pregnancy. But, I just wanted to have a baby so bad I was not going to give in to the illness and the thought of terminating another child, even if my life was at risk.  At one point my mom called my family and said, it does not look good, they think she will either lose the baby or we will lose both of them.  My the grace of God I am here today and I have a beautiful son. I only wish he had his older brother with  him.

 

I am just so saddened by this, why did my doctor not tell me he could help me? Why did he not tell me it had a name? I thought doctors were supposed to help those who are ill, but I think my doctor just got frustrated with taking care of me and dealing with my insurance and told me I needed to terminate. I trusted my doctor and felt he knew what was best for me, but now I feel so sad and angry, that a professional doctor told me it needed to end, when I think with his care and understanding of the illness I could have had my baby.

 

Dr. Phil, thank you for doing this show. I can't wait to see it and find out more about this illness that took the life of my child and a brother for my son. Every doctor should have to watch this show! I am just in tears. 

 

Sincerely,

Janet

I have already posted a brief hello here, but wanted to share my story of HG for those who are just learning about HG for the first time...

 

My story of HG is a long one, so I will do my best to keep it brief. Warning, it contains vivid memories of HG and the death of our infant son.

I found out on my 20th birthday in 1988 that I was pregnant with my first son. The first time I threw up, I couldn’t stop smiling, it all felt so real, so amazing to me. But it didn’t take long to get to the point that I was hospitalized. The medications available in 1988 were not at all helpful to me. I had reactions to all of them which were almost as bad as the HG itself. One made my eyes feel like they were literally on fire, I would sob with cool washcloths over my face, and felt sicker than ever. One made my head turn to the side and my eyes roll up in the back of my head. It was horrible. The only treatment I responded to was IV fluids, everything else made me feel much worse.

When I was hospitalized for a week, they had me in a room with a woman who had just had a mastectomy. The nurses would come in to drain her wounds and I could hear the suctioning sounds and threw up every time. We were right across from the nurse’s station, and they were making and burning popcorn all day and night. It was absolutely horrible for me. One time I asked for help b/c my emesis basin was full and I was still feeling very sick. My blood pressure was down to 85/46 and I was too dizzy to walk to the bathroom. The nurse said she was too busy and took the basin and left it on a shelf still full, across the room. I just had to turn my head and throw up down the side of the bed.

My next pregnancy was exactly two years later. I went to the doctor because I thought I had the flu, but it turned out I was pregnant. I spent twenty weeks very sick and untreated because the medicines didn’t help.

My third pregnancy was an unplanned delight, just 15 months later, but caring for two toddlers while being so sick was very difficult. I would put my two older sons in their play room with toys, while I laid in front of the door to make sure they couldn’t get hurt or leave the room. I just laid there on the floor with my small bowl I could spit into and dry heave into. I hadn’t had any fluids in weeks, so there was no need for a large bucket, all I ever threw up was bile and blood.

Twelve years later, in 2004, I remarried. My new husband very much wanted a child, and I warned him about HG and its horrors. We decided to try anyway. My three teenage sons were committed to helping me when I got sick. There is no way you can describe HG to someone who hasn’t seen it though. I really don’t think my family knew what they were committing to. The first few weeks I just had morning sickness. I felt ok at times and at other times, I felt pretty bad. But I had enough of the good times to keep myself hydrated.

Then at twelve weeks my world came crashing down. I went from throwing up just a few times a day, to throwing up non-stop. I called my doctor who said “If you feel worse tomorrow call me.” My husband was out of town for work, and I called him to let him know how sick I was. He made arrangements to come home early. I continued to throw up constantly for days. Every day calling the doctor and begging for help, every time I got the same reply, “Call tomorrow if you feel worse.” She had prescribed Zofran which was a miracle drug for me but she said I could only take 4 mgs every eight hours. If I had the miracle of holding down the Zofran, I would be sick again within just a couple of hours. This was unrelenting vomiting, standing at the kitchen sink vomiting over and over and over for hours. My legs were sore from standing, my chest was sore from heaving. My son urged me to lay in bed with a small bowl since it was only bile anyway. So I tried that but felt even more dizzy. At least my legs could rest though. Our insurance company denied my refill of Zofran stating that the regular dose of Zofran is nine pills every thirty days. I would cry tearless energiless sobs alone in my room, begging God for help. Finally my husband took me to the ER. The nurses there immediately hooked me up to IV fluids and called my OB. They came back into my room and said, “Your doctor is very upset that you let it get this bad, she said, ‘next time tell her to not wait so long to seek treatment.’”

At that time the insurance company decided it was cheaper to authorize the higher more frequent dose of Zofran than to keep me in the hospital, so I was given Zofran and sent home.

The next month of my pregnancy was spent very sick, yet surviving. I just kept repeating to myself that at the end of this horrible sickness I would have a beautiful baby to hold. I pictured my husband holding his first child, my teens holding their baby sibling, and my mother in law holding her first grandchild. I just had to keep it in perspective. Then December 20, 2004 I got the news that changed my life forever. We received the results from our amniocentesis, our precious son, Jordan, had a condition known as Trisomy 18. 80% of babies with Trisomy 18 are stillborn and 90% die before their first birthday. Our world seemed to crash down around us. My husband and I sobbed and sobbed for days. We did not tell our family this heart breaking news until January, not wanting to scare their view of the Christmas season.

The first phone call we did make was to our OB. We asked to come in that day for an appointment. We wanted to know all about Trisomy 18, and wanted to know all we could do to help our son beat the odds. He had a 10% chance of celebrating his first birthday, we wanted to do all we could to see him that day. That phone call pulled the rug our from under our very shaky legs. Our OB advised us to terminate our pregnancy. I told her that was not an option for us. I asked her what we could do to help our son. She said, “It is just a pointless nonviable fetus, you have Hyperemesis, there is no reason to continue this pregnancy.” I told her we wanted to come and talk to her in person. She refused to see us until our regular appointment that was scheduled a month away. She told us that she would not authorize anymore Zofran either. She said that it was an expensive medication and it wasn’t worth her office staffs’ time to deal with our insurance company for a pregnancy that should be terminated anyway. As I hung up the phone, I felt completely abandoned. What on Earth could we do? Our own doctor wasn’t going to help us, but we need a doctor. I really had no idea what step to take next.

We talked with some friends from church who agreed to pray for us. They urged us to find a new doctor. A friend from work made some phone calls and found a doctor willing to take us. We went to our next appointment with our regular doctor hoping to see a change in her attitude. She was even more cold this time, insisting that I needed to terminate the pregnancy and just get back to work. She discontinued my disability leave and continued to refuse to authorize Zofran. I felt like not only was she giving my son a death sentence but she was sentencing me to death too by taking away the medication that was saving my life. She was using the Zofran as her leverage to force me to terminate. She said it was not her job to care for sick babies and that if I wanted help for Jordan I should just find a good pediatrician. She refused to give us any further ultrasounds or fetal care, stating, “It is just going to die anyway.”

We scheduled an appointment with the new OB. We went in ready to fight for our son. I wrote our a list of demands we had for our care. When I finished fighting for him, we allowed the doctor to speak. He told us that his baby had been born with a fatal birth defect as well, and spent weeks in the NICU. He said that he would do anything he could for us. He scheduled two ultrasounds, a non stress test, and refilled my Zofran. I walked out of there with fresh hope for my son.

Just two months later, our son Jordan William was born alive! He was the most beautiful precious child I had ever seen. He was tiny weighing in at only 2 pounds 6 ounces, but so strong and beautiful. He squeezed our fingers and looked into our eyes with so much love. We were gifted with the miracle of 32 hours with Jordan before he went to be with Jesus.

Three months later, we conceived our second son, Joshua. My HG with him only lasted for about a month before suddenly I felt totally healthy again. I figured God had blessed me with health on our last pregnancy. I went in for my regularly scheduled appointment in my second trimester, and found out that he had died. Autopsy results later told us that he had Down’s Syndrome. Since losing Joshua, we have lost two more babies to very early miscarriage.

We have tried to conceive again for nine months now and have had no luck. It is such a difficult thing to try month after month, knowing that even if we get the desire of our hearts to be pregnant again, we have months of battling the horror of HG and the fear of loss. It seems our marriage has been plagued by two and a half years of grief, sickness, and death, with very little time for joy and rejoicing.

You can read more about Jordan at http://jordan.newlifeshasta.com/

Yes--

 

Recently I actually taped an A&E special on the Bronte sisters solely because I was curious to see what the producers/script would actually say about her death...whether they would actually use the NAME (Hyperemesis Gravidarum).

 

NOPE.  They actually said she was too "frail" to withstand nausea and vomiting of pregnancy.  That is it.  Disgusted me.

I am fortunate to have been able to attend the taping of this show. Words really can't describe how closely Allison's story hits home, or how badly I feel that so many people failed a sick and suffering mom of twins. What hits me the most is that when Allison started on the road to becoming a mom- she never, ever could have forseen the tragedy that has happened.

 

I am a mom blessed with three children- a 7 year old son and 2 year told twins girls. I survived Hyperemesis twice, in both my pregnancies, from about week 6 til birth. Unless you have been thru the hell, it's not something you can comprehend. Nausea, dehydration, malnutrtion, dehydration, exhuastion, weakness, muscle atrophy, and depression. That becomes your world while you battle this terrible disease. What should be a happy and hopefully healthy time for expecting moms becomes sometimes a sheer battle to survive.

 

With my twins, I had very serious complications- and like Allison I finished my twin pregnancy completely and totally physically incapable of caring for my twins. I carried them nearly full term, and my most frequent source of nutrition was my PICC line (a semi-permanent IV line) for which I used to do daily IV fluids and vitamins. I combatted the constant illness with many different medications... and then at the end of my pregnancy needed an emergency c/s because I my blood pressure was high, and my blood was breaking down.

 

Mentally, I was no better off. For anyone to be so sick for so long- it affects their spirits and their ability to cope. Postpartum, I was left to spend the first year of my twins life in a dark hole of Post Partum Depression (for which HG can leave a mom very vulnerable to) and Post Traumatic Stress Disorder (directly from the trauma of the HG illness and traumatic delivery). At times, I found myself ruminating on suicide, death, or simply just running away. The post partum health complications I had (anemia, heart issues) left me terrified. Three times I did pass out, once when I was alone with my twinfant daughters. During the taping of the show, Allison's sister conveyed how Allsion didn't feel she could PHYSICALLY care for her twins. In the shape she was in- she had reason to be scared!

 

"There but for the grace of god go I".... unlike Allison I had a husband and family close by who were able to provide just enough support that I didn't completely lose my mind. But I know the weakness she felt. I know the hopeless she felt- that she may never recover and never be healthy and vital again. Enduring such a horrible pregnancy, and still being physically exhuasted and spent (Allison almost died during her c/s delivery and needed blood transfusions) can leave you paralyzed for fear. I do not for a moment DOUBT that Allison both wanted and loved her twins. But she had spent the past many months in a terrible state of mind- and probably (and rightly so) feared that something bad would happen if her twins remained in her care. I remember being so weak that my 5 lb babies were just too much to hold. That's where the Hyperemesis left me. I "gained" 2 lb by the end of my pregnancy, and left the hospital with about a 15 lb weight loss. I carried my twins to just under 37 weeks. They were born small for their gestational age, and had to be in the NICU. HG is a vicious beast, and while there is treatment for the disease there is not a "cure".  

 

I remember  being unable to grocery shop, or cook, or do much of anything other than try to recover from surgery, 8 months of vomiting, and being mentally fragmented. Were I in Allison's shoes... 48, not 28.... unmarried.... no family close by to help....   it really is not an exaggeration to say something terrible would have happened to either me or my babies.

 

There should have been a support system in place for Allison. Where was it? Where was the social worker? Where was the extra support from the doctors who provided Allison and her babies with care? Where was an adoption professional, who would be inpartial, and able to make sure all is on the "up and up" with an adoption?

 

Allison was in a state of crisis. She needed help. She did NOT need or DESERVE to have to lose her children after enduring all she did- NEARING losing her life- just to bring them into the world. I pray justice, true justice will in the end prevail for Allison AND her son and daughter.