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carissa
07-20-2008, 06:44 AM
Hello.

My name is Carissa. I have had a diagnosis of lupus since 2006. I have mostly mild symptoms, but something terrible has happened recently (that may be related to the autoimmune disease) and I wanted to see if there is anyone out there who has also had this happen. My son was stillborn at full term at the end of May. I am on an online support group for this loss, but I have not found anyone else who has lupus in that group.

My disease was in remission for six months before I got pregnant and it was not active during the pregnancy. I do not have anticardiolipin, antiphospholipid antibodies or SSA/SSB antibodies. I went into the hospital with red urine 24 hours before he died, but there was no diagnosis for that, either - no infection, no kidney stones, no ruptures, nothing. The doctors could also find nothing wrong with my son. Is there anyone out there who has suffered this sort of tragedy and found that it was related to your autoimmune disease?

Thank you,
Carissa

KathyW1958
07-20-2008, 06:57 AM
Hi Carissa,
Welcome to the site. I am so sorry to hear about your loss. Sometimes a child is stillborn with no real reason for it. I can not say that the Lupus did or did not cause it. Have you talked with an immunologist about this? It seems like if the Lupus caused it that it would show up in the tests. There are a lot of good folks that come here and post. I am rather new to the site, but not to Lupus as I have had it most of my life. Maybe Saysusie will have some more information for you. Please do keep posting and checking out the posts.

Kathy

carissa
07-20-2008, 07:55 AM
Hi Kathy,

Thanks for your message. I have had Sjogren's and Grave's disease since 2004, then Lupus popped up in 2006. I have probably had these problems for much longer, since I can remember having vague symptoms and generally being sickly and weak since high school. My thyroid disease was treated with radioactive iodine ablation in 2005, and I've been on thyroid hormones ever since, so that's under good control.

I am just desperate for an answer to why my son died. I know that in 50+% stillbirths, there is no known cause, but I had risk factors. I would like to know if those factors caused his death so that I know whether to risk another pregnancy. My autoimmune disease has been mild so far, so the pregnancy itself was uneventful until Aidan died. It's awful to not have a diagnosis for myself or for Aidan. I have a consult with my high risk OB in a couple of weeks to go over everything in detail and I'll see my rheumy again that week and she's going to go over everything to see if there was something they missed.

Thanks again for your message.

Carissa

KathyW1958
07-20-2008, 08:26 AM
Hi Carissa,
I am glad that you are going to see a high risk OB doctor and maybe they will have more answers for you. My daughter had problems having a baby too as she had a tubal pregnancy and had to have one of her tubes removed and then she had a miscarriage. We serched and serched and serched for answers as to why this happened to her, but there just was not any out there. She finally had a baby boy this past June on the 4th. I know though when all this was happening with her, I was more depressed then I had ever been in my life. I could not help, but blame myself for it as I have serious Auto-immune problems as are listed at the end of my posts. Understandably when she was pregnant with Tyler, her new baby, she was concerned about whether he would be affected and be sick, because of me. I told her that I would pray very earnestly that he would be very healthy and that there was a very good chance that he would be very healthy. As far as the past that happened to her, we will probably never have an answer. I hope that you can find an answer. I will keep you in my prayers and please don't give up on having children, they are a true blessing.

God Bless,
Kathy

Ghina
07-20-2008, 09:43 PM
Hello Carissa,
I am sorry for what u've been thru! I know it really hurts... I also had lupus since 2006, and probably had it before without knowing.
My mom had two still births with two boys. She isnt a lupus patient, but as far as I remember she always suffered from joint pain and never knew whats wrong with her due to ignorance and lack of money.
From what u said I think you can have another baby God wills, as u said still births happen to healthy people for no reason. Maybe next time you should be watched more closely. I just think u shouldnt give up trying again and I will pray that God will grant u whats best for u!
Hope u get solid answers soon.
gin

Saysusie
07-21-2008, 07:47 AM
Hi Carissa;
The cause of many stillbirths is unclear, and while there's increasing evidence of a strong link between stillbirth and poor growth in the womb, in 50 per cent of cases, the reasons for death are unknown.
Was this your first pregnancy? I am sure that you did not smoke during prenancy, so that leaves the pre-exisiting problems or pre-eclampsia as possibilities.

Pregnant women with Lupus are at risk for pregnancy complications, including high blood pressure, diabetes, hyperglycemia, blood clots in the placenta, toxemia, preterm delivery, and sudden emergent need for cesearian birth.

High blood pressure and diabetes have been found to be some of the pre-existing problems that have contributed to still-birth, especially in women with Lupus. It is true that the risk of stillbirth is four times greater for women diagnosed with lupus than with healthy women. However, you mentioned that you do not have anticardiolipin antibodies, lupus anticoagulant or APC upon testing. However, Lupus can affect pregnancy in several ways at at any stage of the pregnancy.

It is not clear whether the severity of the disease or the type of medication causes problems. However, there are higher pregnancy risks associated with lupus. The rate of miscarriage is higher, ranging from 9 to 40 percent. Later pregnancy loss may also be more likely. Pregnancy complications that may be increased in women with lupus include, but are not limited to, the following: miscarriage, preterm delivery, especially with a lupus flare, premature rupture of membranes (early breaking of the amniotic sac), pregnancy-induced hypertension (high blood pressure of pregnancy), intrauterine growth restriction (poor fetal growth), and stillbirth. Because of the complications that can arise in pregnant women who have Lupus, all Lupus pregnancies are considered high risk.

As I mentioned earlier, it is thought that high levels of antiphospholipid antibodies (antibodies that cause abnormal blood clotting) may be linked with stillbirth. However, pregnancy loss may also be associated with the severity of lupus at the time of conception, or if lupus begins during pregnancy. It is also thought that kidney disease (lupus nephritis) with lupus plays a role in pregnancy loss and/or stillbirth.

Lupus also can cause thyroid dysfunction and thyroid disease has been linked to stillbirth. The prefix "hyper" means "over" or "above". Hyperthyroidism occurs when a person's thyroid gland (located at the front of the neck, and secreting hormones that regulate many metabolic processes) becomes overactive. The most common form of hyperthyroidism is known as Grave's disease.

You should also know that Hyperthyroidism can start during pregnancy in healthy mothers, triggering various symptoms to appear, including hard or fast heartbeats, nervousness, trouble sleeping, nausea, and weight loss. As most of these symptoms are likely to happen anyway during pregnancy, it can be easy to miss that they are being caused by a hyperthyroid condition. Hyperthyroidism has a tendency to become severe in the third trimester of pregnancy, and sometimes leads to premature labor. A pregnant woman's poorly controlled hyperthyroidism can cause her to be at increased risk for miscarriage, premature labor, pre-eclampsia (late term high blood pressure), stillbirth, low birth weight, and even heart failure.

You mentioned that your Lupus was in remission and that you only suffer from mild Lupus. As such, it is really difficult to say if your Lupus was actually the cause for Aiden's stillbirth. I've just outlined, above, how Lupus can affect pregnancy, there is no evidence that any of these causes fit your particular case. I am so sorry for your loss and wish that I could be of more help to you.

I wish you the very best and pray that you are able to find some comfort.

Peace and Blessings
Saysusie

Pretti in Pink
07-21-2008, 05:58 PM
Hi Carissa,

I extend you my condolences for your loss, I can relate. I don't know if this was lupus related but it is good that you are trying to educate yourself on lupus but also please remember that somethings are left unknown and there was no error on your part or anything that you could have done to prevent it. Stillbirths have even occurred in perfectly healthy people with no preexisting or pregnancy conditions.

I'll be praying for your healing.

carissa
07-21-2008, 06:10 PM
Hi Ladies,

Thanks so much for your kind responses. I am going to keep searching for an answer, even though I may never find one. I am hoping to try to get pregnant again this fall, since my doctors tell me that there was nothing that I did to cause this and nothing that is likely to repeat again.

If nothing else, lupus has taught me that life doesn't always turn out like you expect it to...and losing my son has reinforced that truth. On the bright side, though, my lupus has not been as bad as it could be, so there is always hope, even in the worst of times.

Thanks again. I am constantly amazed by all of the caring people I find in this world.

Hugs to all,
Carissa

Oluwa
07-21-2008, 06:17 PM
A baby is God's opinion that life should go on...Carl Sandburg.

I am glad you are going to try to conceive this fall..hugs.

Love,
Oluwa

Wendi
07-28-2008, 07:36 AM
I am so sorry to hear about your loss, I did not have this happen, but did
have pre term labor with my second two children. I also had them before
I was diagnosed. Had I had them later, I probably would not have been able to carry at all, but who knows for sure. Good luck, and you are in my prayers.
Wendi

laurid8967
07-28-2008, 08:02 AM
I just wanted to extend my condolences on your loss....You are in my prayers...
I have never had this happen, but I have had three miscarriages, my last one was in the second trimester...it was awful..
I am glad you are trying to educate yourself on your disease and that you are seeing a high risk doc...
May God be with you at this difficult time and know that we are here for you as well....feel free to vent all you need to..
Love Lauri

carissa
07-28-2008, 10:41 AM
Thanks for your kind messages. We've done some consulting with other doctors, and it seems like our doctor should have recognized that there was a problem with our baby and should have given me a c-section well before Aidan died. Autoimmune disease seems to have been ruled out as the cause of death at this point, but there are a few more tests to look at.

Thanks again,
Carissa

wonderwoman6
08-24-2008, 08:28 AM
Carissa, I lost a son when I was 7 months pregnant to thenataphoric dwarfism type 2. I was told he had already passed as I felt him have seizures in utero. I next had a healthy baby girl that I had to take fertility drugs for to conceive. I just had another girl 8 weeks ago that was completly unplanned but a blessing. I found out I have lupus when I was 6 months pregnant with the last one. I was also anti-ro which put the baby at risk for its heart to just stop because the antibiodies can go in and attack the heart and they will die. I am not a dr. and this is what I remember so look it up please and ask your OB. I wonder if you have the anti-ro antibiodies. My son was born with a slight heart beat to everyone's shock. I held him for 113 minutes until he died. I was insane with grief for a long time. My heart goes out to you. I had to have NSt(non-stress test) for the last 3 months 2X a week and she was born with some anomolies and was closely watched but she has outgrown them. I found a lot of info. on the Mayo site. Did they do an autopsy? My son that I lost was my 3rd. I would suggest to get blood work done and to see about the anti-ro antibiodies. Good luck to you.

carissa
08-24-2008, 08:48 AM
Thanks for your message. I am so sorry about your son. We did have an autopsy performed, but there were no abnormalities. I was monitored for anti-ro and heart issues, but there were none. My doctors are at a loss. I am trying to conceive again, and I have had lots of blood work (all normal) since Aidan died. I am hopeful, but scared, too.

Congratulations on your new baby. I hope to have happy news soon.

wonderwoman6
08-24-2008, 06:09 PM
Carissa, First I want to say I love your name. I almost named my firstborn that name. When I was at your time after losing a baby I was in no shape mentally to concieve so I am proud of you for trying. I waited until after the one year anniversary. I look back now and realize though that I seem to have been in a almost constant on and off again flare since then and it was in 2005 that I lost him. I read lots of self help books and read the bible literally cover to cover and took lots of bible study to help heal myself. I was terrified the whole time I was pregnant the first time after my loss. It was even worse after I found out I had lupus and the anti-ro, APS and gestational diabetes and then pre-eclampsia. My husband is going in to get "fixed" next Wed. to say the least. He is 43 and acts like he is 60 so he is too old anyways. I too was told that I have mild lupus and it has been in remission. I don't understand why they told me I was in a flare last week and wanted me to start the malaria and pred. if I am in remission. I am assuming you are going to a different OB? Did you go to a perenatologist with the last one? It drives me NUTS that they cannot tell me what caused my son to have what he had that took his life and at least I was able to find out through amnio. I hope you find peace. There are some great pregnancy books like surviving the next pregnancy after a loss or something. I can't remember but I am sure if you google it they will come up. Good luck with everything. I love this site as I am finding so much valuable and helpful information.

carissa
08-25-2008, 05:09 PM
Thanks about my name. My mom picked it out (my dad had some very odd name picked out for me). The plaquenil has helped me stay in remission, I think - is that what they want you to start taking? It seems really mild and they told me to take it even during pregnancy. I am going to see a new OB. I was being monitored by a perinatologist rather frequently. Aidan was due for another detailed ultrasound the day that we learned he had died. Thanks for the well-wishes. I will need them as I try to take a journey through another pregnancy. I hope your flare (is that what they want you to take the pred for?) settles down soon.