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Medical Forum / Diseases and Disorders / Lupus / April 2004Lupus-Pregnancy Question
Hi, I am sorry if I should not post here. I have never used a newsgroup before. I have read many articles on this newsgroup and think its wonderful. Let me start of by saying that my wife has lupus. Five years ago me and my wife were very happy when she found out she was pregnant. Shortly after she became very ill. She could not walk or even get out of bed. She was so fatigued that she slept most of the day. I remember going back and forth with her to the doctors office and the hospital with a great fear that she had MS. When we found out she had lupus we were somewhat relieved (only from the ignorance about knowing about this disease) that it was not MS. But we did see the worry on the doctors face. Since then we have read about the disease and unfortanely learned the hard way also. She spent the entire pregnancy in bed or in the hospital. She has had an elevated heart rate since being diagnosed (120 bps). She had water around her heart and lungs. She developed pleurisy (sp?). High creotene levels and was afraid that she needed dialysis. I came home one day and saw that her knees were literally the size of basketballs. She was so sick of every thing going wrong she tried to hide it from me and did not call the doctor. I brought here straight to the hospital and thank god it was not yet septic (or at least to my understanding). As the pregnancy went we had many scares. She was positive for anti- rho (sp?) so we had weekly ultrasounds to check for heart blockage. The triple screen came back positive and we were very worried that the baby would have down syndrome. We had the amnio and every thing was fine. By this point my wife , Diane, was very depressed and worried about her unborn child. Looking back her love for our child kept her going and not give up. After trying many different drugs nothing seemed to work and she end up being allergic to two of them, she tried prednisone and things started to improve. She was able to walk around the house somewhat and do some chores to keep her mind off things. Praise the lord for predispose. At 35 weeks she had premature rupture and labor was induced. Unfortunately the labor lasted almost two days and she just had no more energy. I really wished that they would have a c-section but the doctors were worried about her prednisone levels and her ability to heal after the operation. But instead she passed out from exhaustion and they had to force the baby out with much damage to my wife. She spent a week in the hospital, came home for a day (damn insurance companies) and then had to go back for another week. The baby, Matthew was healthy, no heart blockage or neo-natal lupus. We felt very fortunate for the final outcome. I cannot imagine what my wife went through. I barely made it through with the worry of losing her and my son. The next two years were a little rough but we made it through. I had the ability to stay home from work when she could not get out of bed and watch our child. Diane is a strong as they come. And we managed this drastic change of life style. After about two years she had better control of her life. She was able to go shopping more regularly(she missed that dearly). She felt decent during the day, but still pretty exhausted at night. During the next couple years she was able to reduce her prednisone to 10mg. She had some major flare ups during that period but got through it. Sorry for the long history. I haven't even gotten to the question yet, but I guess I needed to share our past with people who can relate. Surprisingly I do feel like some of my stress has diminished. If you read this far thank you! Now to the near present. My wife and I are somewhat of planners. We bought our house at a young age (thank god because we couldn't afford one now with a single salary), and planned to have two children. Since she started feeling a bit better we discussed it for a couple years. It was one of those tough decisions in life. We both wanted another child but I was afraid for her health and our mental ability to deal with a miscarriage or worse. We decided to talk to the rheumatologist. She was sort of on the fence, stating the facts of the risks but also stated that some women with lupus get better with pregnancy. After a year we decided to have the baby. Everything started well. She felt better than ever. She was much more active. Still had minor ache's and pains at night but she did not feel exhausted. All test for the baby were fine. Growth was good and heartbeat was good. We made it all the way to 25 weeks before things started to go wrong. During the ultrasound the doctors saw a bright spot on one of the heart valves. The next week we saw a specialist and the white spot has grown and spread to the other valve. She had no idea what could cause this. She said it looks like calcification of the tissue around the valve but has never seen this in a fetal heart. We saw another specialist and she agreed that this was highly unusual. Since the have never seen this before they did not know what to do or if anything needed to be done at all. The function of the heart looked good. My wife was confident that everything was okay because of the activity of the baby and because she knew worrying would not help the baby. So we saw a cardiologist weekly for a heart echo. Things kept on progressing. One valve is almost totally shut and they found a "pinch" in the aorta. The left side of the heart is now smaller than the right side due to back pressure. The cardiologist sent us to Children's Hospital in Boston for an opinion. They also had no idea of the cause of this. They said the valve itself is not operable but some surgeries may be able to bi-pass the left side of the heart. So we are planning to have the baby at Children's Hospital so immediate action can be performed. My wife and I are trying hard to be positive. Week after week of bad news is starting to get to us. We are currently waiting for the doctors to decide when the baby will be delivered. We are at 34 weeks now. So now my questions that some of you may know. First has anyone heard of calcification of the valves and aortic route and or any links with it to lupus? Second, I am still being told that the doctors are not planning to have a c-section because of the prednisone an risk associated with the procedure. Has anyone had experience with this. I am worried if they induce her again and there is a long labor, that she would have the energy to go through it. It seems to me the risk of c-section is more in control than induced labor. Any thoughts or info would be appreciated. And thank you for listening (or reading) to our story. Jeff Hi Jeff , I am glad you felt comfortable opening up to us. It sounds as if you are going through a lot. It is nice to see such a supportive and caring husband keep up the good work. Around here on the weekends is very slow. I did not want you to get discouraged when someone doesn't respond. > So now my questions that some of you may know. First has anyone heard of > calcification of the valves and aortic route and or any links with it to > lupus? I have worked for a cardiologist before and calcification of the valves and the aorta is something that is found in Lupus patients ( I got this info from overhearing the cardiologist that I worked for) I have a valve problem myself, but as far as in infants I am not sure. There is a person on here named J that will be on shortly to probably give you info. You can also search the American Heart association website or simply type in the word Aortic calcification or heart disease in infants and you will get several websites that can help. *****Remember I am not a doctor that this info is just In my personal Opinion. Thanks and Welcome, RhondaM > Hi, > I am sorry if I should not post here. I have never used a newsgroup before. [quoted text clipped - 99 lines] > > Jeff > > So now my questions that some of you may know. First has anyone heard of > > calcification of the valves and aortic route and or any links with it to [quoted text clipped - 3 lines] > from overhearing the cardiologist that I worked for) > I have a valve problem myself, but as far as in infants I am not sure. <http://www.ohiohealth.com/healthreference/reference/A038E013-B5B7-441E-987315C01 6877AFB.htm?category=questions> Calcification of the aortic valve (aortic valve sclerosis) is due to calcium deposits on the leaflets of the aortic valve in the heart. The valve's leaflets are flaps of tissue that open and close, allowing blood to flow through the heart valves in only one direction. Aortic valve sclerosis occurs most often in people older than age 65. As you age, your heart valves usually collect deposits of calcium, a mineral found in the blood. As blood repeatedly flows over the aortic valve, it leaves calcium on the leaflets. When aortic valve sclerosis occurs in people younger than age 40, it's often associated with a valve defect that's present at birth (congenital). In most people, these minor calcium deposits never cause any problems. But in some, calcium deposits result in stiffening of the valve leaflets, which makes the leaflets unable to open and close properly. This stiffening narrows the aortic valve opening (aortic valve stenosis) and may impair the heart's ability to pump. In severe cases of aortic valve stenosis, signs and symptoms may include: Shortness of breath (heart failure) Fainting Chest pain A doctor may suspect aortic valve sclerosis on hearing a heart murmur with a stethoscope. An ultrasound of the heart (echocardiogram) can confirm a diagnosis. Mild calcification usually needs no treatment. In severe cases, it requires aortic valve replacement surgery. Also, people with aortic valve sclerosis or stenosis are at greater risk of heart valve infections after some dental, medical and surgical procedures © 1998-2003 Mayo Foundation for Medical Education and Research See I told you J is very knowledgeable........J's a gem :o) > Hi Jeff , > I am glad you felt comfortable opening up to us. [quoted text clipped - 158 lines] > > > > Jeff I have 2 children. I was diagnosed while pregnant with the 2nd. I'm married, 10 yrs this October My opinion on my life We want another child but we think it's unfair to our 2 children and irresponsible. I don't have a lot of energy now... and what I do have, would be further divided. And I just don't think I could really handle a pregnancy plus a newborn...AND my 2 other children. Something would have to give... and I know that it would be the attention to my other 2 children. I also have a lot of pain and am in pain managment. One can use pain meds during pregnancy but it's not ideal. Not to mention muscle relaxers, sleep meds, plaquenil, etc, etc Also, it's not known how lupus is passed around... it does run in families that we know.. but so far, we don't know if it's genetic or what. We feel that without knowing, it's not right to have another child. That it would be selfish on our part. We truly feel blessed. Things could've gone horrible wrong and we're so thankful it didn't. I try to focus on the blessings I have and push my wants/desires aside. Take care Nicole > I have 2 children. I was diagnosed while pregnant with the 2nd. Hi Nicole, I wonder if you were on prednisone during your 2nd pregnancy? I also wonder if you had any of the signs and symptoms that his wife did (during your 2nd pregnancy)? specifically "water around her heart and lungs" ? I don't know if that's the Prednisone or CHF http://www.cardiologychannel.com/chf/ Either way, fluids around the heart/lung (whatever the cause) and the weight of the baby, and not feeling well I would think would part of big strain on one's heart, but I don't know. I would want to know if Diane currently has a heart condition, then discuss options with her doctor(s) J No, I wasn't on prednisone. I don't use it unless I have to. I also didn't have any problems. My 2nd pregnancy was MUCH easier than my first, all the way around. But next time, who knows? I think my responsibility is to my current children and that's why we choose not to have any more. Nicole > > I have 2 children. I was diagnosed while pregnant with the 2nd. > [quoted text clipped - 11 lines] > options with her doctor(s) > J > No, I wasn't on prednisone. I don't use it unless I have to. I also didn't > have any problems. My 2nd pregnancy was MUCH easier than my first, all the > way around. But next time, who knows? > I think my responsibility is to my current children and that's why we choose > not to have any more. > Nicole Thanks for answering my questions, Nicole I fully support your choice. Hugs to you, J > Hi, > I am sorry if I should not post here. I have never used a newsgroup before. > I have read many articles on this newsgroup and think its wonderful. Let me > start of by saying that my wife has lupus Welcome to the newsgroup, Jeff. Of course you may post here. Your wife has Lupus. Shelagh's web page http://members.shaw.ca/tiderington/index.htm has a section on Lupus and pregnancy which amongst others says "It is important to note that although many lupus pregnancies will be completely normal, all lupus pregnancies should be considered high-risk. High-risk is a term commonly used by obstetricians to indicate that solvable problems may occur and should be anticipated. Pregnant lupus patients should be managed by obstetricians who are thoroughly familiar with high risk pregnancies and who work in close concert with the woman's primary physician. During pregnancy, flares most often occur during the first or second trimester, or during the two months immediately after delivery during the postnatal period. The most common symptoms of flares during pregnancy are arthritis, rashes, and fatigue. " J http://www.lupusmn.org/Education/Articles/LupusandPregnancy.htm Long article so just posting part of Will My Kidney Disease Worsen During Pregancy? About one-half of lupus patients have some degree of kidney disease. The worse it is, the more likely it is that there will be problems during pregnancy. The most common problem that occurs in women with kidney disease is a complication of pregnancy called toxemia, or pre-eclampsia. In this condition, the blood pressure rises, protein is excreted in the urine, and fluid collects in the legs and elsewhere. The most effective treatment is for doctors to deliver the baby as soon as possible, even if the baby is premature. Although women with very severe kidney disease even those who require dialysis can carry a pregnancy, the risks to both the baby and the mother are very high. As a general rule, if a woman's blood pressure before pregnancy is high enough to need strong medications to keep it normal, or if the kidney function measured by creatinine clearance is more than 25 percent less than normal, pregnancy will likely be a problem. If a woman with any type of kidney problem gets pregnant, she should be closely monitored throughout her pregnancy by her nephrologist, rheumatologist and obstetrician. How Will I Be Monitored During My Pregnancy? There are two types of monitoring, one for the mother and one for the unborn child. For the mother, monthly visits (sometimes more frequent visits) to check for new symptoms and to check urine and blood for signs of lupus activity are often required. The most important factors to watch are the red blood cell count, platelet count and urine protein. At the beginning of pregnancy, all standard lupus tests are conducted, and antiphospholipid antibody and anti-Ro/SSA and anti-La/SSB antibody levels are determined in order to ensure that the mother is healthy, and so doctors can watch for changes during the pregnancy. The fetus is usually checked with an ultrasound test at the beginning of pregnancy, and its growth is monitored by either palpation (feeling the abdomen to determine how big the uterus has become) or by repeated ultrasound tests. In women with anti-Ro/SSA and anti-La/SSB antibodies, an ultrasound test or a fetal electrocardiogram (done from outside the mother's abdomen) may also be used to examine for normality of the heartbeat. At approximately twenty-five weeks (six months), especially in women with antiphospholipid antibody or with active SLE, a series of tests for the baby's general health begin. None of these tests are invasive, nor are they painful or dangerous to the mother or the baby. Depending on the situation, they might be done one time only, or they might be done weekly or daily. SLE itself does not mandate the need for an amniocentesis to be performed (taking a small amount of amniotic fluid through a needle to determine the health of the baby) but amniocentesis might be done for other reasons. If the mother is over the age of thirty-five, for example, an amniocentesis may be performed. Late in pregnancy, if early delivery is likely, amniocentesis might be done to determine if the baby's lungs have matured. Are There Any Risks To The Baby? There are several risks involved in having a baby when you have lupus, but if the disease is monitored closely during the pregnancy, it is quite likely that your baby will be born healthy. There are no specific genetic risks for the child of a woman with SLE. The frequency of Down's syndrome or other malformations is not higher than in the general population. The major risk to the baby is that it will die before it is born (miscarriage). This risk occurs primarily in mothers whose blood contains antiphospholipid antibody. There are specific concerns that prospective mothers may have about the effects of their lupus on their unborn child. I'm skipping some, so do read it all... What is Neonatal Lupus And Will My Child Be More Likely To Have It? Approximately one-third of women with SLE have anti-Ro/SSA and / or anti-La/SSB antibodies. The children of these women can develop a condition known as neonatal lupus. Neonatal lupus is not SLE and does not turn into SLE. It consists mostly of a rash, often brought about by sun exposure, that lasts a few weeks and then disappears leaving no trace. Babies sometimes have abnormalities of their blood counts that usually need no treatment, since the counts return to normal spontaneously. A rare manifestation of neonatal lupus, called heart block, is more serious. In this condition, the baby develops a very slow heartbeat and sometimes needs a pacemaker after birth. This problem can usually be identified by fetal electrocardiograms or echocardiograms performed between the eighteenth and twenty-fifth weeks of pregnancy. But even if identified, the slow heartbeat cannot be readily treated before birth. The baby's general health is monitored throughout the rest of the pregnancy, and he or she generally will be delivered if in trouble. Fewer than one percent of all lupus patients, and fewer than 3 percent of all women with antibodies to both Ro/SSA and La/SSB antigens, deliver babies with this problem. Babies of mothers who have antibodies to neither or to only one of the antigens are not at risk for this heart problem. > . Let me > start of by saying that my wife has lupus. Five years ago me and my wife [quoted text clipped - 17 lines] > calcification of the valves and aortic route and or any links with it to > lupus? Creatinine is something to do with kidney (renal) function. You don't mention how well your wife's kidneys (or the baby's) are functioning. There seems to be a connection between kidney function and aortic calcification and left ventricular dilatation. Whether or not that can be passed through the placenta (from mother to baby) and affect the baby (or not), I do not know. If not, then perhaps the little one also has kidney problems? I would expect that after delivery, a full evaluation of the baby would be done to know if surgery would be possible. These are questions to ask your experts, because I'm not one. Best wishes to your wife and the little one. I will post something separately about prednisone and c-section J http://www.emedicine.com/med/topic2341.htm Prospective studies have shown that in patients with CRF (chronic renal failure), cardiovascular disease is progressive and may manifest clinically as left ventricular dilatation, arterial and aortic calcification, coronary atherosclerosis, and congestive heart failure. " Hmm. The kidney issues is one thing that has not been brought up. Actually the cardiologist and obgyn probably do not know about it since her medical record is so large. I will bring it up with them. Thank you > > . Let me > > start of by saying that my wife has lupus. Five years ago me and my wife [quoted text clipped - 36 lines] > left ventricular dilatation, arterial and aortic calcification, coronary > atherosclerosis, and congestive heart failure. " > Second, I am still being told that the doctors are not planning to have a > c-section because of the prednisone an risk associated with the procedure. > Has anyone had experience with this. I am worried if they induce her again > and there is a long labor, that she would have the energy to go through it. > It seems to me the risk of c-section is more in control than induced labor. Hi Jeff, I posted separately the risks of C-section. They mention heart. If your wife has a heart condition either method of delivery, I imagine, would a risk to her. I would imagine that both would be a risk to the baby unless this time she's lucky and can have the baby naturally, no anesthetic. But it would seem by your post that they want to "induce her"? (worried about the baby?) Having had abdominal surgery myself (and when I was young and very healthy), I know how hard and long it is to recover. I would never have been able to care for a newborn baby, much less two, for at least a month. With your wife's Lupus problems, she may have great difficulty. If you look at the Caesarian post and since you mentioned pleurisy, I would think with the Prednisone use, her risks of infections and pneumonia are increased..and possibly poor healing of the incision. These are all decisions to be discussed privately and with the doctors. I could tell you what my choice would be if I had your wife's health conditions and had to choose between possibly losing my life (and leaving you and my first healthy baby with no mother), I'd choose me over the baby that seems to already have heart problems and may require heart surgery. But that's me, weighing the need of the first child vs the possibility that trying to save the pregnancy might result in the loss of both. You would have to discuss this with the doctors. I'm not an expert in any of this. Best wishes in the outcome and your decision(s) J > Second, I am still being told that the doctors are not planning to have a > c-section because of the prednisone an risk associated with the procedure. > Has anyone had experience with this. I am worried if they induce her again > and there is a long labor, that she would have the energy to go through it. > It seems to me the risk of c-section is more in control than induced labor. Hi there Jeff, hang in there with us. One lady is away, there's many here who have had children. Perhaps others can relate whether they had similar issues, so you can get a full breadth of replies. If no similar situations here, since you are consulting with experts, I would think the best is to take their advice. Do ask them what to expect and how they plan to manage things for your wife so she has less damage this time. All my best, J > At 35 weeks she had premature rupture and labor was induced. > Unfortunately the labor lasted almost two days and she just had no more > energy. I forgot to mention: My brother's daughter (neice) had this. He's the one who might have Lupus so it leaves me wondering on many counts. Her mother is Canadian Native and her sister lost a kidney and she gave one of hers to her sister. My neice had quite a rough time, and stayed in hospital longer than usual. The baby was a preemie but with proper care, was eventually deemed healthy and no problems found In any event: Quote from Lupine Lyndal (who happens to be a doctor also) "Prem rupture of membranes is unusual, but almost a normal variant, especially if 38+ weeks. I was only 35 so it was considered abnormal, but we didn't know why" More about Premature rupture of membranes (PROM) http://www.healthsquare.com/mc/fgmc0215.htm http://www.womens-health.co.uk/prom.htm FYI and FWIW J Hi Jeff, You are more than welcome to post here. I am glad that you shared your wife's story with us. You sound like a very supportive and caring spouse. Diane is blessed to have you as her husband. I am sorry to hear about all she has been through. I have never heard of such a probem in an unborn child, or any connection to lupus in the mother. I do understand the concern of the doctor when it comes to a C-section. However, I suspect that they may go ahead and do that if labour is too difficult or not progressing. One thing to keep in mind is that labour is usually much shorter second time around, than it is with a first child. Diane might breeze through it fairly quickly. Please feel free to talk to us anytime. We do like to help, even if we can only listen and give some morale support. My regards to both of you. BJ-Sk. Canada > Hi, > I am sorry if I should not post here. I have never used a newsgroup before. [quoted text clipped - 99 lines] > > Jeff > However, I suspect that they may go ahead and do that if labour is too > difficult or not progressing. One > thing to keep in mind is that labour is usually much shorter second time > around, than it is with a first child. Two very good points BJ Thank you and hugs to you J > Hi, Hi Jeff and Dianne Good for you Jeff for writing on behalf of Dianne. You sound like just the sort of supportive and loving husband needed to deal with Lupus. I am sorry I can't help with your first problem - only with the second. I am 37, had Lupus diagnosed age 15 and have been on prednisone since then: never less than daily dose of 5mg, mostly 10mg and a couple of dozen instances of increased doses. I have a 9 1/2 year old daughter. Luckily and thankfully, I had a very successful pregnancy and natural birth. However, I was told from the beginning of my pregnancy (which was planned with medical approval) that if, at any time, my health was in danger then the baby would be delivered by c-section. As I said, I have been on prednisone for 22 years and have had a few operations during this time - including a kidney transplant. I really cannot see why your wife would be denied this procedure - particularly if she has previous problems, and the procedure can be planned.. When I have had to have operations before, I get a booster IV dose of methlyprednisolone and usually an elevated dose of prednisolone for a little while after. Maybe there are other considerations, but this is my experience. Good luck to you both. Winny. > So now my questions that some of you may know. First has anyone heard of > calcification of the valves and aortic route and or any links with it to [quoted text clipped - 11 lines] > > Jeff Jeff, You and your wife sound like amazing people. Those babies are very lucky to have parents who love them so much and have gone through/are going through so much to get them safely into this world. I had a difficult first pregnancy (I hadn't been diagnosed with lupus, yet). The biggest problem was preterm labor, which I also had in my second pregnancy 2 years later. I have SVT (superventricular tachycardia), which reared it's head when my youngest was about 2 - but I had palpitations with both pregancies. My heart rate would suddenly hit 170 - 180 for no apparent reason. I've been taking meds to keep it under control. Do the doctors think the stress of the pregancy is causing your wife's heart rate to be high? Is it that high all of the time? She must be exhausted! I bet you are, too. I have a friend whose baby had severe heart problems in utero. Mom's health wasn't an issue, so they did a scheduled C-section so that the cardiac team for the baby could all be in place, and because it is much less stressful for the baby. I would think the the damage done to your wife's perineum (bottom) from a traumatic birth would take as much healing as having a well done C-section, maybe even more. Since cell damage can trigger a flare, my ancient knowledge from nursing school suggests that you would have more cell contents released by tearing than you would by a neat incision. I'm not currently taking predinisone, but my rheumatologist told me I SHOULD take it if I have surgery or a significant infection. In fact, they gave me a dose IV when I had minor surgery a few years ago. You didn't mention what kind of a dose your wife is on - if her dose is pretty high that may be why they are so concerned. I assume you have discussed with the doctors your fears about her going through a vaginal delivery again. What does the rheumatologist say? He/she probably has more experience with healing following surgery in lupus patients than the gynecologist. My heart goes out to you and your wife. You'll all be in my prayers. Please keep writting so we know what's happening. This is a very caring group. Remember to take care of YOURSELF, too. Being the spouse of a seriously ill person is so frightening and stressful. I've been there myself when my husband had surgery for a very rare tumor. I can't imagine having that worry for two family members. Does Children's Hospital have a support group for parents? How about your local chapter of the Lupus Foundation? They may be able to help connect you to some folks that can give you both personal support. Maybe even find a couple who's been through a tough pregnancy who can call/visit. Once again, please let us know how things are going. Gretchen Hi Gretchen, Thanks for the words of encouragement. Diane has been on 10mg of prednisone for the last year. It took her almost two years to drop from 30mg to 10mg. She was and is doing pretty well as the lupus goes. As for her heart rate, it has been that high for the last 5 years. Her good days she will have a heart rate of 90-100. Her rheumatologist had a heart echo done on her and is not overly worried that there is any major damage being done. Her weight went up significantly since using the prednisone and the first pregnancy. She has a pretty small frame. The rheumatologist felt the additional weight maybe somewhat responsible since it was so quick. She did lose a significant amount of "water weight" once she was reduced to 10mg. Her rheumy is excellent by the way. All of her doctors are from Umass Medical Center, so that all the records are easily shared between them. She monitors all the doctors recommendations with the pregnancy and she see's Diane once a month. She calls Diane for encouragement and to make sure she is doing well. We discussed the cesarean with her and her feelings are to do it if necessary. If there are any complications with the delivery she would recommend the c-section. We have been going to Umass Medical weekly for heart echos. This week we were transferred to Brigham and Women's hospital for a new high risk obgyn. We had a heart echo and found out that the flow through the mitral valve has further diminished. The nice thing about Brigham and Women's Hospital is that it is next door to Children's Hospital. The OB called the pediatric cardiologist over for his opinion. The OB was thinking about delivering the baby today. The cardiologist recommended to wait a little while longer so the baby can grow a little more. So we are going to have a heart echo done twice a week until they feel it is absolutely necessary to deliver the baby. They also said they would induce no later than May 19th which is 38 weeks. We may have a name to this illness. It looks like it may be Shone Syndrome(sometimes called Shone Complex). It is very rare and very dangerous. Unfortunately there is also another abnormality. We have seen 6 different cardiologist and they have never seen diffuse calcification such as this on a fetal heart. So they are not to sure what to do. The will see how much calcification there really is if there is time for exploratory surgery after delivery and make a decision then. This is starting to take a toll on us. Weekly we are told more bad news and no answers as to what can be done. In general we expect doctors to have all the answers but I guess sometimes the just do not know. So we are in waiting mode right now and it may last another 4 weeks. Fate is sometimes an evil thing. We were worried about miscarriage and a heart block (which we were told had a very good surgical success rate) but ended up with a very rare condition with a very high mortality rate, a separate condition that has never been seen by some of the best doctors in the world. I ask you to pray for us. That maybe our only chance. Thanks, Jeff > Jeff, > You and your wife sound like amazing people. Those babies are very [quoted text clipped - 45 lines] > > Gretchen > Hi Gretchen, > Thanks for the words of encouragement. Diane has been on 10mg of prednisone > for the last year. I was on 5 mg when I had my surgery and didn't have any problems. My mother-in-law had surgery a while ago when she was on 10 - 15 mg (for severe asthma) and she didn't have any problems with healing. Just in case you do have a C-section, you know others have done it without complications. The OB was thinking about delivering the > baby today. Because Diane is having problems? The cardiologist recommended to wait a little while longer so > the baby can grow a little more. So we are going to have a heart echo done > twice a week until they feel it is absolutely necessary to deliver the baby. I can't imagine the stress and heartache of living day to day like you are. I had pre-term labor from 27 weeks and we dealt with the knowledge that the baby could be born any day, and be very tiny - but the heart problem has to be so terrifying. I remember what a toll that stress took on my friend whose baby had the heart condition. > They also said they would induce no later than May 19th which is 38 weeks. > We may have a name to this illness. It looks like it may be Shone > Syndrome(sometimes called Shone Complex). It is very rare and very > dangerous. Unfortunately there is also another abnormality. We have seen 6 > different cardiologist and they have never seen diffuse calcification such > as this on a fetal heart. I am so sorry. This is one of those times when there is really nothing to say except that you, Diane and both your children are in my thoughts and prayers. Amazing things can happen through prayer. If the prayers aren't answered the way you want them to be, don't think that God isn't listening. Thanks for the update. We'll be hoping you'll be sharing some better news soon. Gretchen Prayers are going up for your family. Hang in there. (((((((HUGS)))) Sending lots support and prayer your way!!! RhondaM > > Hi Gretchen, > > Thanks for the words of encouragement. Diane has been on 10mg of prednisone [quoted text clipped - 34 lines] > > Gretchen |
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