About

I am a full time working mom of 3 girls, ages 7 (Miss A), 5 (Miss K) and one angel forever 4 months and 6 days old (Anneliese), stolen from us by SIDS. Soon after her death, I was diagnosed with thyroid cancer. I had a thyroidectomy in November of 2012 (entire thyroid was removed), and then radioactive iodine in January of 2013. I am not considered “cancer free” but it’s not growing either. Right now it’s just a wait and see. My health trials are nothing though in comparison to the loss of our third daughter. Every day is a struggle, and I am desperately searching for my “rainbow” after the storm.. happiness in some shape or form.  Whether that comes from accepting and loving my life the way it is, and moving on, or hopefully being blessed with another baby in the future is up to God.

 

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10 Responses to About

  1. NoMoreLongQT says:

    Doctors do have a few ideas about SIDS. One is what my adult daughter died from. It is a heart rhythm disorder of the hearts electrical conduction system called “Congenital Long QT Syndrome”. They DO NOT believe ALL SIDS deaths are caused by this heart issue, but indeed, it could explain SOME of the deaths. In the case of a SIDS death, it would be good if doctors could always recommend other immediate surviving family members have their hearts checked by a board certified pediatric or adult (depending on whether it is a parent or another child) cardiologist. Much more information on these heart disorders can be found at: http://www.sads.org

    I lost my precious daughter, Emilie, when she was 22, because two adult cardiologists missed her diagnosis on the ECG of her Holter Monitor test. It was only after her death and a negative autopsy and toxicology, that we found the cause of her death. My husband, myself, and two living children, all have a gene for Congenital Long QT Syndrome. Also I believe 2nd hand smoke has also been named as another cause of SIDS, but again–this would not be in every case. Knowing what I know now about all this, if I had a baby, I would not use bumper pads, wedges, and probably not even those swaddling blankets that many Moms feel are completely safe. I would be afraid even though the baby can breathe through the gauze fabric, they could get the blanket tangled around their necks as they get older and move around a lot more. I also would not co-sleep–why take the chance? I wouldn’t even use those carriers with the babies face buried into the mother, as this forces the baby to re-breathe their own exhale. I’m a nurse by education, and have been studying everything I can possibly learn about CLQTS for over 16 years. My heart goes out to you in the loss of your precious daughter, Anneliese. I in no way felt that the parents whose babies were pictured there (I read the entire “Parent’s Magazine” article) had been negligent. I came away with a much different message–error on the side of caution with co-sleeping, no bumper pads, no wedges, and no propping up of the mattress to elevate it for reflux, etc. Also I came away with it’s safer for the baby to sleep in the parents room for the first few months, even though I didn’t do that with my three. I just didn’t want to hear every little peep, but knowing what I do now, if the baby is safer there–that is what I would do. Just speaking about this on a blog honors the memory of your precious, Anneliese. She is proud of her Momma’s efforts to inform others about SIDS. God Bless You & Comfort You in Your Loss!

    • prayingformyrainbow says:

      Thank you for your reply. I am so sorry to hear that you also lost a daughter. How frustrating to have a misdiagnosis that lead to your loss. I am glad that you didn’t find the article as placing blame. It is hard to read the article from my perspective and not get emotionally tied up in the fact that it seemed to suggest that SIDS often could be prevented. I am all for supporting safe sleep for babies. I just had hoped the article would delve more into the unknown nature of SIDS, and at least give a case, such as mine, where the parent followed all the rules, did everything right and their baby still died. That SIDS means that there is no cause to be found. I believe it is multifactorial, and being in the medical field myself, I am aware of long qt but we have not been tested. There are not many samples left at the medical examiner’s office from Anneliese. If I may ask, in your case where did you have testing done? I was told that Dr. Ackerman at the Mayo Clinic was the only one doing it. I tried to contact him to enter Anneliese in the study, but his nurse would never return my call. I called at least 8 times. Finally I gave up. Do you know of anyone else who tests? Did insurance cover the testing for your surviving family members? Do you mind me asking if you had any other sudden death in the family, or was it just a mutated gene? There is no sudden death, or SIDS, in my family, yet I am paranoid that my other two girls could have the same thing happen.

  2. NoMoreLongQT says:

    Ironic. Since Losing my precious daughter, Emilie, rainbows are my favorite thing in the whole world. Hugs to you and your family.

  3. NoMoreLongQT says:

    I would love to talk with you personally. Is there a way I can contact you through your actual E-mail address? What you describe with Dr. Ackerman’s lab has been the experience of others. I think they possibly took more tissue/blood samples than they could keep up with. I don’t know if they are still actually testing blood, but you must have gotten super frustrated calling their 8 times. I once talked to a medical examiner from St. Louis (where I’m from) and she said she had sent samples on a rather high profile person to their lab and had not heard anything about a year later. To me, that is just unconscionable not to answer calls, etc. How long ago was that? I have his assistant, Carla’s E-mail address actually.

    Our blood was actually tested 3X, as the first results were not reliable as the blood got “lost” en route and was not “spun down” in a timely fashion, so I never trusted those results. Those results showed my husband and two living children to have LQT-6, and I believe I was negative. Because of the problem getting the blood there in a timely fashion over the New Year’s Holiday, my husband & I were lucky enough to get results from Dr. Ackerman’s people. Then because in one place I had been found positive, and in another place negative (Dr. Ackerman found me to be positive for LQT-2, we needed a tie breaker, so we were again lucky enough to be included in Dr. Arthur J. Moss’s study in Rochester, N.Y. are the U. of Rochester Medical Center). I was again found to have LQT-2, and my husband and son were found to again have LQT-6. My daughter was never re-tested as she almost “faints” when getting blood drawn, and probably has a full-blown case of LQT syndrome anyway and is on beta blockers, as I am also. Dr. Moss no longer has the study going for blood, I’m not really sure about Dr. Ackerman. But yes, there are two places in the country you can get blood studied for these syndromes. SADS can help you with the letters to the insurance, etc. One lab is called Familion—
    http://www.transgenomic.com/labs/cardiology-familion

    and the other is called “Gene Dx”—

    https://www.genedx.com/.

    I think those are the only two commercial labs in the country to be licensed for the CLQTS testing. Other electrical conduction defects, some also have structural issues are things like: Wolff Parkinson White Syndrome, CPVT (catecholiminergic polymorphic ventricular tachycardia), Brugada’s Syndrome, Short QT Syndrome, ARVD (I know an expert doctor on that in Tucson, AZ that was the one instrumental in our diagnosis by re-reading Emilie’s Holter Monitor test). I have included their web sites just above here.

    So we never had to pay for our testing. Unfortunately when my two granddaughters were born in San Diego, my son didn’t even want to bring up the issue to his wife, as our granddaughters could have had their cord bloods sent to Dr. Moss’s people at the time I believe. He didn’t want to worry her, but now that has implications on the drugs they should avoid because we don’t really know if they have their father’s (my son’s) CLQTS gene–LQT-6. As you said, I also did everything right, was even a very cautious, worry-wart type of Mother, and still, my daughter died in her own bed at home, despite the fact that she had been seen by two adult cardiologists around 8th and 9th grades. I might add they were not even in the same practice, but now I would know that the doctor should have been a pediatric cardiologist and not an adult cardiologist. I wish there was some way we could talk, without me putting my actual E-mail or phone number online. I wonder if I could somehow contact WordPress, and give them permission to release my E-mail address to you privately?

  4. prayingformyrainbow says:

    I sent you an email. 🙂 check your junk folder too in case it went there

  5. Molly says:

    Thank you so much for putting a comment on my blog and continuing to read Jovi’s/our journey. You are amazing. For what you’ve been through….
    You are so strong. I admire you. Admire for being so real… And for just foraging on when life has handed sheer awfulness. Thank you for sharing your story.

  6. I have just come across your blog as I am trying to connect with other mums who have suffered the same loss as we have. Not that I would want anyone to go through what we have had to go through but at least you understand the pain and the unfair cruelty of life. Your blog is open, honest and heartfelt. I am so sorry that you lost your darling baby girl and I join you in the hope to find a reason for SIDS in our lifetime. That’s the promise I have made Eddie, who was tragically taken away form us to SIDS in April this year. Would love to connect via email if you wouldn’t mind? All the best, Jen x

  7. I came across your blog this evening when searching for other bloggers who like me are angel mums. I’m very sorry for the loss of your daughter and even though time passes it hurts just as much. I hope you don’t mind me following your blog and reading all about your special girl. I hope one day you are blessed with the rainbow that you are searching for ❤ x

  8. Hi thanks for following my blog that one is just my everyday family musing/record one. My other one is my journal about loss but as it is private no one can see it unless I invite them. If you could email me at thepinkyone@hotmail.com I can invite you to follow it via email. x

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