Friday, June 28, 2013

A plea

It's been almost a year and a half now since our last child was born and died. Since then, we have been looking for answers. We've met with various medical professionals, undergone different genetic tests and we are now at a dead end. My last blood test result for platelet antibodies relating to NAIT was negative and the geneticist and maternal-fetal specialists we've been working with do not know where to go from here. I keep asking questions about what else can be done to help us find answers but feel like I am grasping at straws. Every test we have taken has come out negative or shows that our daughters should have been born healthy, but I still feel like there must be something wrong since our two girls' cases are so similar, in my opinion.

Briefly, our oldest (2008) and youngest child (2012), both girls, were born via emergency C-section at 37.5 weeks due to a lack of fetal movement and decreased fetal heart rate. Our first daughter had confirmed intracranial hemorrhaging, low blood platelet counts, and she lived for two days. Our second daughter had very low blood platelet counts with no confirmed intracranial hemorrhaging although a biophysical ultrasound performed just before she was born showed a large, dark spot in her head (which could have been intracranial hemorrhaging). She only lived for an hour. Autopsies of both girls were inconclusive. We have had a healthy boy in between both girls. My husband and I have both undergone microarray and mass carrier screening genetic testing. I have also been tested for NAIT antigens and antibodies. All test have come back negative. In this day and age of technology and medicine, it is difficult to believe that we have had two baby girls born who have died shortly after birth with no answer or diagnosis to the cause of their deaths. Somewhere, there has got to be someone that has experienced what we have experienced and found an answer.

The unexplained loss of two full-term babies is heart-wrenching. We love our girls and speak of them daily wondering what they would be like if they were alive and with us today and how they would get along with their brother. My husband and I want to have more children and feel like our son needs a live sibling. We are looking into adoption yet I still want to find some medical answers for peace of mind and in case whatever happened to our daughters may someday affect my son and any future family he may have. One of the most difficult things about dealing with the deaths of our daughters is that I have no way of knowing if this will happen again or how we can prevent it if we decide to have another baby. The birth and death of our baby girl in January 2012 was a shock to us because our son had been born healthy in between our girls.

So, here I am making a plea. I am asking you who have friends and families that have children, you who may be a medical professional or have a family member or friend who is a medical professional, you who may have heard of someone who has experienced or if you have experienced something similar to our situation, please help us. Help us find out why our two daughters died in infancy and how we can prevent this from happening again in the future. Even if my husband and I find out that we shouldn't have any more biological children, at least we would have an answer. Please help us make contact with someone who might be able to help us find some answers. If you have any information or referrals to send our way, please email me at helparia at yahoo dot com. You can also leave me a comment here or send me a facebook message. Thank you for any help in sending us in the right direction.

19 comments:

Mary Rogers said...

hugs Aria! I hope you are able to find some answers!

Jennifer V said...

I hope you get answers, and I'm sending you prayers and hugs. -Jennifer V.

Diane said...

Aria,
We hope you can find some answers. We love you and are praying for you.

Crystal said...

Big hugs aria. I wish I had answers or a theory or something for you. Just know I am praying for you guys and sending lots of love and hugs. xoxo- Crystal

Desiree said...

We will ask around and keep praying for you guys to get answers. We love you!

Heather said...

I hope you find the answers you need as the unknown and losses must cause such heartache.

Not exactly sure what all of the testing you have done entails, but has it included testing for RH factor in yours and the babies blood? Is your blood type possibly negative and your girls were positive? Your husband maybe partially positive but not all of the rh factors?

RH incompatibility can cause serious blood problems if the baby's and mothers blood mixes which can be caused by amniocentesis, trauma to the abdomen, early cord clamping, etc.. anything that has potential to damage the barrier between your blood and the baby's blood.

This likely has been checked but worth putting out there as sometimes the little things are the things missed.

Really hope you find answers! and are able to grow your family more.

Anonymous said...

I don't know what NAIT is but have you investigated reproductive immunology? There are only a handful of good ones in the country....the Beer center in CA, SIRM institutes in several places in the country, dr. Braverman in nyc. I am investigating this area myself now after 4 consecutive losses. I am so very sorry for the loss of your babies....

Shoni said...

I'm so sorry for your loss. I'll share your story and hope someone can provide some answers.

Shells said...

I hope you find answers Aria.

Reed and Jen said...

My comment did not show up so here it goes again :) First of all I am so sorry for your losses. That has to be so hard.
I don't know exactly what it is, but I may have a few ideas from my own experience.
My platelet count is lower than normal and drops during pregnancy. Normal range is 140,000-400,000. Mine is while normally around 120,000 and in labor and pregnancy it drops to 47,000 in labor.
I have seen a few hematologists during and after pregnancy and they had a few ideas but no real solutions since mine is a mild case and does not affect me or my 2 girls so far. (except not being able to get epidurals and bruising easily :) ) I have been told it could be either a low grade ITP (idiothrombocytopenia purpura- sp?) which is hereditary (my sister has some of what I have although not as severe) and is more common in females, or Von Willebrand's disease which is also hereditary and common among females. Both have varying degrees so it may be worth looking into. I don't know I there is anything they can do, but then again I have not had to have treatments.
One thing I noticed that helped a bit; although there are varying views on this, is Omega3's they seemed to help my platelet count level out a bit but they still dropped as the pregnancy progressed. They also speculated that it could be hormone related since I bruise more while on my menstrual cycle.
I wonder if they can do an in utero platelet transfusion?
I hope you find the answers you seek! best of luck!

Jenny said...

Makes me so sad to read your post, and I so hope you and Eddie find answers. The one thing I thought of was that the New York Times Sunday magazine always does an article about a medical mystery. Readers write in with their ideas and then a medical expert figures it out. My thought was that you could write to them to see if they would consider publicizing your case.

Cheeler said...

Aria: I had no idea. I'm so horribly sorry.

I'm an internal medicine physician and have strong ties to a Howard Hughes Pediatric Geneticist at the University of Iowa.

I'd need more details of the medical course and the person I could put you in touch with might need access to medical records. Email or text me and I can see what I can do. Can't promise anything, and one very hard lesson I've learned over the years is that medicine/science often doesn't have any answers.

tyler dot haberle at gmail dot com
three one nine, six two one, eight eight zero three.

Anonymous said...

I am so sorry for your losses. My first daughter was stillborn at 39 weeks after a seemingly healthy pregnancy. Her autopsy showed she was healthy. The only possible issues that my doctors uncovered were blood clotting factors... it turns out that I have two different genetic blood clotting disorders (MTHFR and PAI-1), and it's possible that microscopic blood clots were the cause (never confirmed through the autopsy or anything else though). I was treated with blood thinners in both of my next two pregnancies and had very early scheduled deliveries at 37 weeks. Have you been tested for blood clotting disorders? I hope you find some answers, although of all people I understand that sometimes we never get all of the answers that we really need. I will be thinking about you. Alison

Erin Fairlight said...

Love to you Aria. My mother lost 4 children after 30 weeks due to lide factor 5 (line factor 5?) not sure which. Which is also a platelet clotting disorder. I know this is not the focus, but for future thoughts we are at the end of an adoption of 2 twin sisters from the DR Congo. So if you ever go that direction I will help you negotiate the paperwork and the organizations at every step. Again, all my love to you.

Anonymous said...

So sorry for your loss.I lost my son at 37weeks.He was born sleeping he's heart just stopped.He was perfect.I suffered low blood platelets in my last trimester and they told me it maybe Hellp Syndrome but I didn't have protein in my urine or high BP.My blood clumped 5 times and eventually I had to go straight to hospital for a hemotologist to check me bloods they were going to induce me but decided not to.5 days later my son was not alive.I feel it had a connection.

Shelley Jepson said...

My heart goes out to you. I understand the need to search for answers. My daughter is still alive but is multiply impared from a stroke in utero. Earlier detection could have helped her but we didn't find out this exact cause until years later. The Geneticist we worked with for brain abnormalities is Dr Dobyns out of Seattle Childrens. He's a wealth of knowledge and knows many others in his field with varying specialties. Not sure if he can help you but his name is what I have to offer and I know that you are leaving no stone unturned in your search! Best wishes in your search for answers!

Wanda Anthony said...

My heart goes out to you, Aria. I hope you finds the answers you need soon.

Rebekah said...

My third child was basically stillborn, but brought to life on a ventillator for a few days. No known cause. We want(ed) more children, and while cause was unknown, I wanted to do my part - I'm sure you kwim. I began examining health and nutrition in earnest. I listened to my body more - slept when tired/fatigued, ate a more traditional diet, but also what felt good (along the lines of listening to my body), de-stressed every possible facet of my life, and dropped all exercise I didn't have energy for - so down to walking and yoga (I came to realize I suffered from adrenal fatigue, and had symptoms of hypothyroidism - although blood work wouldn't show it).

I have had a healthy baby born since then. I found good nutrition information through this Beautiful Babies book, based on the principles of the Weston A. Price traditional diet. Anyway, this is the first place I'd send you if any of this rings familiar to you and/or you think this might be a fit - the book covers eating the correct types of fats, pastured animal products, etc. I actually even had zero morning sickness while drinking raw milk. Here's a link: http://www.amazon.com/Beautiful-Babies-Nutrition-Fertility-Breast-feeding/dp/1936608650/

Carbs are really important for adrenal function, though, and everyone seems to be slamming carbs these days. I make sure to have carbs as a significant part of my breakfast (pancakes, hash browns, etc.). If I can send you one more link, it's to Matt Stone's Diet Recovery book, which taught me principles of raising my metabolism and thus health: http://www.amazon.com/Diet-Recovery-2-Matt-Stone/dp/1483922146/

I don't think I was "unhealthy" before, but I also feel really good about the improvements I've made to my health since then.

Jennifer B. said...

((HUGS)) to you Aria! I will pray that you get some answers.