This post is personal and stirs up painful emotions for me. But it’s been on my heart to try to talk about since I started this blog. It’s a topic gap I’ve seen in our food world, and I think that it’s important to address. But it’s such a tender topic that I’ve been hesitant to. My hope is that sharing some of my thoughts on this topic makes the blogging world a safer place for those who have experienced loss in the form of miscarriages, stillborn infants, and for parents of children with birth defects.
Does our diet make a difference?
In the health food genre, inspired so much by the work of Dr. Weston A Price, there is a wonderful, thrilling focus on the fact that we can help rebuild our own health, and the health of our children. There is a beautiful hope that we can better care for our bodies during and before pregnancy to give our children healthier lives. I appreciate the work and research so much that shows us that preconception diets and what’s eaten during pregnancy does indeed have a lasting effect on our children. It’s both sobering and hopeful.
But it can also create an atmosphere of false assurances. I’ve noticed that there is a thought process often expressed that if we just eat pure enough, cancer, health issues, birth defects and miscarriages will never ever land on us. It’s almost like a demi-god for some of us – if we serve the god of health enough by feeding ourselves the purest and best diet of all, then we will receive back perfect health.
Unfortunately, all of this can create a very judgmental attitude towards those experiencing any type of health crisis. This is especially painful when this attitude is displayed towards those dealing with the loss or illness of children. It’s a natural tendency as parents to blame ourselves for anything that happens to our children, and this can be exacerbated when a community views any health problem or premature death suspiciously.
“What did they do wrong?” everyone wonders.
Our story
Some of you know that we lost our dear first daughter, Faith Felicity, at the age of (almost) two months. She was born with a rare birth defect that necessitated immediate life-saving surgeries or a heart transplant. She was a fighter through and through, and we had wonderful albeit stressful weeks with her, bonding with her and enjoying her incredibly delightful personality, before a quick decline led to a surgery that went wrong and she passed away. It was heartbreaking on so many levels, and she is constantly missed.
Our heartbreak started when we first discovered her heart defect through an ultrasound. That shock and heartbreak were brought back to me when I read Danielle’s post about recently finding out that the daughter she is carrying has a rare genetic disorder with dire consequences. I can relate so much to what she is going through – everything from being told you have an option to abort and refusing that option, to the emotions experienced, to putting our trust in God during the midst of great suffering and pain.
After we had found out about our daughter’s condition, I was asked by others – before she was born and after – whether her birth defect is linked to any nutritional deficiency. That question burned and hurt, because it seemed to be a question of whether or not I was to blame for her birth defect. It was a question I had asked myself already. (We were told emphatically that it was not linked to any deficiency, though who knows if someday they will find out it is.) But I think that one of the reasons this question is asked is because other mothers were looking for some clear reason connected to our situation that they could then hopefully avoid through simple supplementation and food. No one wants to think that they also could go through such heartbreak.
Doing our best and wise expectations
We mothers are “mother bears” and I find that most are like me, and we would do almost anything to ensure the well being of our children. Dr. Price’s work and more recent research has impressed me with the impact diet can make on future generations and I am so thankful for it.
But let’s be realistic and thoughtful about our expectations as well. As a friend to many in the community of food purists, I know that while so many of us have an improved quality of life, better health for our children, and many other benefits, even so loss through miscarriage, birth defects, stillborn children, cancer, and other childhood sicknesses are not unknown.
There are so many reasons we could point to if we wanted – there are studies showing that toxins now bombard us, and unborn babies are exposed from day 1 to these toxins. Genetic mutations, EMFs, and who knows what else can be factors in the health of our children – in utero, and out. We know we don’t live in a perfect world, and that pain and loss have always been with us. We know that a select few birth defects are linked to nutritional issues (that could be blamed on poor food quality in third world countries, poor absorption of nutrients despite an excellent diet, and a myriad of other facts unrelated to the will of the mother to attempt a healthy diet). We know that there is a lot that we simply don’t know.
We live in a dangerous, imperfect, fallen world.
Finding balance
There is a tendency to either fall into one of two camps – both unbalanced. Either you become a food purist and try to overcome every evil by controlling your diet perfectly, or you throw up your hands and say nothing makes a difference for anything, so why try.
I’m trying to find a balance. I believe that a good diet is crucial to our health, and the health of our children. This isn’t the post to share all of the research, but there is a lot out there to support the idea that we can help our children have better health through giving them a well balanced, nourishing diet. And yet, we can’t control all the factors of this world; we live in a toxic world, and our parents, our government, as well as the neighbor spraying chemicals all over their yard could have made decisions that affect our well being.
I know that I can’t hold back all of the pain and suffering of the world from us by the food I serve. But I do know that the momma bear in me will work at doing the best I can, imperfect world and all, for a better, if not perfect, future for our children.
Advice for showing love
A word of advice from someone who has been there – when a friend finds out something is wrong with her baby or has a miscarriage. Don’t shame them with questions about what they did wrong, or ask them why it happened. It’s very rare for us to know the answers to those questions, and such questions are insensitive. Instead, ask how you can help, and come alongside to carry their sorrow in any way you can. Friends did that for me in many lovely ways, whether it was offering fervent prayers on our behalf, bringing me nourishing food at the hospital, or raising and giving money to help support us during our dark hour. I will never forget their support. While faced with unimaginable sorrow in the loss of our child, I saw a beautiful picture of love in our community of friends, and in the love that I shared with the daughter I said goodbye to.
It’s a goodbye I believe not to be forever, and I look forward to meeting her again when all such sorrow and pain is erased.
Until then, we carry on, accepting what we can’t change and working hard to change what we can.
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No words, except to say, “Bless you, Kimi”. I had no idea. Perhaps this is the Grace I always see come forth in your writings (or what you choose NOT to write). Peace and Christ’s love….
Thanks, Heather. You are appreciated.
Wonderfully said. My healthiest preconception period was followed by a pregnancy with a baby we never got to hold. I ate all the right foods, took all the right supplements, and yet something went wrong and we experienced a miscarriage at almost 11 weeks.
Writing a fertility blog, I’ve watched other women do the same, and then place blame on themselves even when they did everything “right”. There is only so much we can do in this fallen world.
Balance is key and showing love to others so very important. Thank you for addressing this topic!
Thanks so much for sharing, Donielle. I see that same self-blame game going on too.
This is an excellent, much-needed post. Thank you.
Blessings to you and your family, Kimi. This is such a beautiful post. Thank you.
Thanks, Hearthrose!
Thank you for this. As someone who’s dealing with infertility along with other health issues, I struggle to keep a balanced view of eating a reasonably healthy diet, while refusing the extra helping of guilt that comes because I haven’t bought into whatever the latest healthy eating craze is. Sometimes friends who mean well just make you cry more…
Raquel,
I’m so sorry for the trials you are going through, and the fact that well meaning friends cause more pain. *Hugs* Best wishes for a better tomorrow for you.
I had a baby girl, Lilly, that lived 17 months with Trisomy 18. I was told that genetic condition is “incompatible with life” and she lived longer than expected. When I was pregnant I tried so hard to eat right, take the right supplements, exercise, etc. and of course pray like crazy. I sometimes wonder if I could have done more of course. But I also wonder if I went “above and beyond” and that’s why she lived as long as she did. But in the end, I remember that she lived exactly as long as God wanted her to. I too look forward to seeing my daughter again one day!
Lisa,
What a brave, mama you are! I felt that every single minute I got with my dear Faith was precious, and I’m sure you felt the same way. When she died, I was comforted by Psalm 139 that tells us that everyday we were meant to live was written down for us before we were even born.
Hugs and prayers for you and your family. People don’t appreciate the miracles involved with the formation and birth of a child. There are so many factors totally out of our control, and DNA coming together from two people to form a new DNA product in the child, well we can’t control that. Some things in life are out of our hands, and that is probably a good thing on many levels. Take care of your family and don’t let others get you down. People are way too judgmental.
What a beautiful post. so needed in this fallen world we live in. i am past child bearing but am anticipating grandchildren soon and will share this with daughters and daughter in law. Thank you.
I’m so sorry for your loss, Kimi. That is heartbreaking. I have four wonderful, healthy children, and have had two miscarriages (in between my second and third). I definitely went through questioning whether I had done something or not done something, why I, who ate such a healthy diet and was so careful, had to say goodbye to a baby I wanted, when drug addicted mothers get to keep theirs, etc. There are just no guarantees in life, and I think what you said here is so important and well said. We just do what we can, but we live in a world where there is sickness, death, disease, and sadly we cannot avoid that. I share your hope and faith that we will one day be reunited with the little ones we never got to hold here on earth. It makes me long for heaven even more. Peace to you.
Thank you for sharing your story. Beautifully words … and important advice. Thank you for taking the time to share this with us.
I am so thankful that you shared your story with us. It was very timely for me to read it. It is truly a blessing to have others to come alongside us in times of sorrow.
Thanks, Kimi, for sharing this post!! It is such a sweet post, and it is a huge encouragement to all who have walked your road. “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.” 2 Corinthians 1:3-4. May the Lord continue to use you to comfort many others!
After my son was born with a genetic condition that neither my husband or I are carriers, I looked for a reason why, including anything I had done so as not to do it agin during next pregnancies. What I learned is that they have traced genetic markers as far back as 4 generations so what your great great grandfather did and down the line can affect the genetics of your baby. That is why I decided to refocus on what I could moving forward. Thanks for your post. I think loss of a child is still one of those things that people cannot wrap their head around so all kinds of inappropriate things get said. I appreciate your advice.
Thank you so much for sharing this! Ironically, it was my healthiest pregnancy that brought me my child with Kabuki Syndrome. I have sometimes been distressed by people within the wellness community that subtly (or not so subtly) imply that I must have done something wrong or, on the flip side, if I would just do everything “right” then she would overcome her syndrome and be whole. It can be heart wrenching and guilt inducing. I wholeheartedly believe that nourishing her little body and protecting her from toxins as much as possible will improve her life but she will always have Kabuki Syndrome.
Mellanie,
“I wholeheartedly believe that nourishing her little body and protecting her from toxins as much as possible will improve her life but she will always have Kabuki Syndrome.” Yes! People don’t understand that there is a difference between being able to improve a life, and make everything go away, such as genetic disorders and birth defects. I’m so sorry for the distress caused by some in the wellness community.
I am really sorry for all the suffering you endured and for your loss. I can’t imagine the pain you experienced even if a tiny little part of it have hurt me too.
However, try to take it easy on you, don’t think too much and enjoy your life for the sake of living.
Life is so complex and finding a safe, suffering-free path on earth is not as easy as we sometime might think. We are all unique, we are all very different, we are the results of constant blending of genes and cells and life style. What means that what is good for me, might not be good for you. There is not a perfect recipe for health life and longevity. There might be many after all and we do what we know, and can. To make things even more complex, we are surrounded by all sort of environments which play some serious roles in our health and well being, and are not easy to control.
Our bodies act, react, fight, win and loose. Our bodies work independently of our understanding, those contradictory and amazing body systems, with their chemical connections, have full control over our lives and health. Oh yes, we all have seen non-smokers die dramatic deaths of lung cancer, or young sport players die of heart attacks at their 20’s. I saw a teenager swimmer, a Olympic gold medalist, die of heart attack after regular day of training. He was born with a heart condition and never knew it. At the same time I followed undernourished women giving birth to countless healthy children who were born to be undernourished (but were aided by the charity I support). I have seen cases of countless children of drug addicts with a healthy life despite their rough beginnings.
The stories of unfairness are endless and sometimes difficult to accept… So, better don’t think too much. There is no justice in nature. There is no such a thing as fair explanation. Justice is a human concept. No matter what, stick to your plan, do your best and, if you believe (I don’t), pray for the best.
We are here with you.
I too read Danielle’s post and have been thinking about her and this issue for days. I think what you say is so heartfelt and truly an underrepresented statement in the real food community. Many of us are living our lives in this way to heal our own bodies, and with great hope that our own children will have a chance at health that perhaps we ourselves haven’t had. That is the case for me.
During my second pregnancy I was far, far healthier than during my first and in spite of that my baby boy was born with a minor birth defect, which was thankfully correctable with surgery. It wasn’t a pleasant experience but we all came through just fine. During my first pregnancy I was very unhealthy and now know I had undiagnosed Hashimoto’s and likely celiac disease. That child struggles with her health still and in spite of years of work we still have not pinned down what is causing her health issues. It is so hard for me not to blame myself for her health issues and as a mama I will probably always carry that burden.
I think this is why I focus so intently on food is because it is something that I can change – it is the best way I know to bring deep healing to my family.
This is the most honest post I have read for a while. Thank you.
I work as a sonographer and I see the fetal abnormalities and miscarriages very regularly and The women involved always blame themselves. As you so eloquently pointed out there is some elements completely beyond our control and that is the world we live in. When a women has gone above and beyond with her own health and still can’t fall pregnant or suffers recurrent miscarriages or carries/delivers a child with an ‘abnormality’ they continue to blame themselves. As for the babies that do live with major or minor problems perhaps they would not have made it as far without the nutrition and commitment of there very own mother. For the babies that are not terminated for been ‘abnormal’ that do get some life outside the uterus and get to be held and feel loved and appreciated (not that a baby that passes in utero is not loved and appreciated) is indeed a blessing for all involved. Even if a life is as short as minutes, hours or days it is still a life and is was worth every second. What really upsets me is that mothers are now offered terminations for the most minor of abnormalities and some times are even cosmetic like a cleft lip which is easily corrected all because of societies views and expectations on having ‘perfect’ babies. I have never met a down syndrome child who ever thought that they don’t deserve to be here with us all despite all the struggles that many have to get through in their shortened lives. In saying any of this though the judgement of women who do decide to terminate is also a melting pot of issues and I am not sure that any of us are ever in a position to judge the decisions of any parent faced with that decision.
Amanda,
Thank you so much for sharing your perspective. We were told that they “legally” had to give abortion as an option for us. It was terrible to even hear that as an option, but it wasn’t pushed on us. Even though our child ended up not making it, many with the same birth defect go on to have wonderful lives, despite the rough start. Life is precious, oh-so-very precious. And I would absolutely be willing to fight for the life of any of my children. I do believe that a culture of having “perfect babies” is absolutely damaging to parents and children. All children are worthy of love, including those who leave us quickly. Thanks again!
Thank you for this. This is my major issue with wapf – the idea that all will be hunky dory if we drink raw milk and take our cod liver oil. I have a daughter with a genetic syndrome and she’s benefited greatly from the work of Dr. Price. However I can do without the idea that I could have prevented her health issues had I eaten differently. I could also do without the “healthy babies” section of the wapf journal. Unhealthy babies aren’t worth celebrating, I guess? Of course Sally Fallon is hardly a champion for those with disabilities, so I guess not.
Liz,
I understand how you feel. I choose not to send any pictures of my “healthy wapf” babies that came later into the magazine for that reason.
thank you thank you thank you. even if it’s not a genetic disorder or serious death/illness, a healthy diet doesn’t always equal a healthy kid. i have a kiddo (she technically a preemie at 35.5 weeks), but even with my healthy diet, still breastfeeding, no daycare, and her incredibly healthy diet, she is constantly sick and under the weather. sometimes you can do everything right and follow every guideline and its still not going to produce the same results for your UNIQUE child/person. thank you thank you thank you.
Thank you for sharing this story. It is so easy to focus on what we feel is in our control and then blame ourselves when something goes wrong. Life isn’t in our control, by any means, as you’ve so eloquently put it.
While I never blamed myself…when I miscarried it was a heartbreaking time. It is so shocking how many women go through the loss of a child but lots do not talk about it. I am glad you shared you heartfelt story, it is important for women to hear others’ words. I am so sorry for your loss, meeting and then having to say goodbye would be so painful.
Kimi, you are a deeply thoughtful and loving mom, who has been through tremendous grief with your family. My heart and prayers will always be with you. I can’t imagine presuming that a mother has done something wrong that leads to harm to her children. (Unfortunately we do see those cases where this is not always true.) I have a 2 yr old little one and am very blessed that he is almost perfectly healthy (very bad eczema), albeit very stubborn and opinionated (Dad’s side). Many more Blessed and wonderful years to come with your family.
Yours truly, Heather P
Thank you for sharing your heart. Experiencing a miscarriage caused me to question what I may have done wrong or could have done better. Grace is a gift we all need to give to ourselves. I wrote a post recently that may be of some encouragement to you and your readers, if you are interested. You can find it here http://wp.me/p4viGJ-8A. I, too, am looking forward to the day when we can be reunited with our children. Thank you, again, for this beautiful post.
Thanks for sharing this personal story, Kim. I am doing my best to eat healthy and reduce chemicals as much as possible in our lives, but we also lost our daughter (at 21 weeks gestation) due to an “unpreventable” diagnosis of Turner Syndrome. I think that it’s so hard to know that sometimes we really have no control, but I’m so glad that you’ve discussed this. Sometimes there no matter what we do, there is nothing we can do that would have changed the outcome. Sending love your way!
Beautiful, and thank you.
I’ve been concerned for some time now that folks in the “real food” and Paleo/Primal communities seem to suggest that eating a certain way somehow “inoculates” them from all bad things. I would wholeheartedly agree that eating a nutrient-dense, real food diet absolutely has positive health benefits, but it doesn’t ward off trauma or all infectious disease. Nor does it protect us from epigenetic factors that might have been triggered when, say, our parents were in their mothers’ wombs. And, as you point out, there’s the environment in which we all live and breathe.
I think you hit the nail on the head, that people want to find out “what went wrong” so that they can prevent it from happening to them. And, as natural a response as that may be, it is important to temper it for the sake of both kindness and, in many instances, sanity.
Plus, my larger concern with this mindset is that it will drive people deeper into the possibility of developing disordered eating, a hallmark of which can be an attempt to translate control over one’s food into control over one’s life.
I have been loving all of the beautiful comments and thoughts shared on this post. Thank you! I was a little nervous about sharing so openly and honestly, but you’ll have blessed me so much with your response. Love to you all!
Bless you, Kimi. We lost our first child as well. He was stillborn.
Thank you for sharing your story. <3
~ Tiffany
Thanks for the comment, Tiffany, and so sorry for your loss as well. *hugs*
I’ve read your blog for a few years, and appreciate what you have to say. I’m so sorry about your daughter. We also lost a daughter, our sixth child, after 5 healthy children, to Complete Congenital Heart Block and Hydrops. We know that she was a gift from God, and He allowed this to happen that she could live with Him until we come. This has given us so much peace. We did not receive any hurtful comments about nutrition, probably because I am the most nutritionally minded person I know!! But we did get a few comments about how if we had gone to an OB and not had a midwife, that maybe things would have been different. Our daughter’s neonatologists told us that that had nothing to do with it. Yes, we need to be careful and sensitive about judging others. We can be thankful for the path that we have been enabled to walk, and just not have to judge where others are!
Thank you for this post Kimi. Our son was born with a heart defect called tetralogy of Fallot. He ended up having open heart surgery. What defect did faith have? I completely agree with your whole post. Blessings, Juli
Juli,
She had Hypoplastic left heart syndrome – generally it’s treated with three open heart surgeries or heart transplant.
Thank you so much for this post. It resonated with me so much. I had two miscarriages before the birth of my daughter, and then three before the birth of my son. We’ve always lived such a healthy lifestyle and fell right into that trap of “what are we doing wrong?” when the truth was, we found out later that the cause for the losses was something we had no control over at all.
I am so sorry for your loss, but truly admire your strength and grace.
This post is really precious, so filled with sensitivity and true emotion. Thank you for your insight and gentle words.
Thank you. I have learned, since Owen’s death, that often people with the best of intentions have the most hurtful things to say. When I hear “You have your hands full!” when I’m out and about, my heart says, “not full enough”. Someone compliments my beautiful family, and I see a hole where there should be a someone. Even now, after having been down that horrific path, I have no words for a grieving mother. There is simply nothing to say.
I envy you, though, that bonding time. Owen was kept unconscious, sedated, and immobilized his entire short little life. If he so much as flinched, or wiggled a finger, they increased his medications. As for they question of why, you are so right, most of us never know. One day I had a healthy pregnancy, and shortly after they were cutting him out of me with a one in a million chance for his survival. And right up there with “why” is “what if”. But in questioning that, I have to follow it all the way, and there are just too many.
I’m not a food purist, I’m more of a “do the best that I can with the time and resources I’ve been given” kind of mama. But there are so many other factors to consider as well. Our water had natural flouride levels 7.5 times higher than the recommended safe dosage. Was it the water? We moved across the country, and had a rough transition into our new home. Was it the stress? Maybe the new climate/elevation that I wasn’t used to? And why my third baby, and not my first, second, or fourth?
And if I could send him a message, with a loved one going home soon? I’d say “I’m sorry.” Because I, like every other mama that has lost a child have found a thousand different ways that I could have done better. Because even if those thousand ways hadn’t made him better, perhaps I could have loved him more, cherished him fully, while he was here.
Melissa,
I’m so sorry about Owen. Like you, I am always aware of Faith’s loss in our family, and how it would be different with her. And good willed people have often said some pretty painful stuff about losing her in an attempt to be comforting.
You are right, we are so grateful that we got to know her for that short while, and because of seeing her personality, it gives me rich fodder to imagine what it would been like to have her as an older child too. That is very bittersweet.
I came up with all sorts of “theories” about why what happened to Faith happened. For some reason, it was a little comforting at first – maybe because it tried to make sense out of a situation that made no sense. I doubt any of my theories would really bear up under scrutiny – but there you have it.
I don’t think that there is a single day that goes by that I am not aware that I could do better as a parent (both in the past, and in the present), so grace to you, mama. We are fragile, but strong, broken, but redeemed people.
I’ve been cooking from your blog for several months now after discovering severe tooth decay in my very healthy 5 year old. I have loved your recipes and your writings.
Thank you so much for what you shared in this post. I had a daughter die at full term due to complications at birth, and it’s always so comforting to hear other women’s stories. It makes me feel less alone.
Thank you.
Kari,
I am so sorry to hear of your loss, but no, you aren’t alone! I think that the reason loss and grief feels like such as lonely place is because we don’t have a culture that expresses and welcomes grief. Which is why I am trying to open up about my own story when I get the chance. I’m so glad it was comforting to you. *hugs*