"I trusted my doctors and nurses ... but I was wrong."
Giving birth to a child should always be an uplifting, happy experience. And most of the time it is.
But sometimes, once the initial high wears off, worry and anxiety kick in. Is the baby healthy? Getting enough to eat? Are all of the fingers and toes intact?
Women today are more often than not strongly encouraged to breastfeed. "Breast is best!" they say. And for most, that is true.
But the option of bottle feeding shouldn't be as difficult as it has become of late. How to feed the child should be a decision made by the parents, and in particular by the mother, and always with the babies well-being and health in mind far above the ideological wishes of anyone.
Not all women produce enough milk (or produce milk at all), and not all women feel comfortable breastfeeding.
One such mother, Jillian Johnson, is now sharing the heartbreaking story of how her own baby died and why his death could have been prevented if she'd received proper guidance and information from the lactation consultants at the hospital in which she delivered.
Jillian Johnson told her story on the website for The Fed Is Best Foundation on February 25, 2017 — what would have been her son's 5th birthday.
"Landon would be five today if he were still alive. It’s a very hard birthday–five. It’s a milestone birthday. Most kiddos would be starting kindergarten at this age. But not my little guy. I wanted to share for a long time about what happened to Landon, but I always feared what others would say and how I’d be judged. But I want people to know how much deeper the pain gets.
I share his story in hopes that no other family ever experiences the loss that we have.
Jarrod and I wanted what was best for Landon as every parent does for their child. We took all of the classes. Bought and read all of the books. We were ready! Or so we thought ... every class and book was geared toward breastfeeding and how it’s so important if you want a healthy child. Landon was born in a “Baby-Friendly” hospital. (What this means is everything is geared toward breastfeeding. Unless you’d had a breast augmentation or cancer or some serious medical reason as to why you couldn’t breastfeed, your baby would not be given formula unless a prescription was written by the pediatrician.)
Landon was on my breast — ALL OF THE TIME. The lactation consultants would come in and see that “he had a great latch and was doing fine” but there was one who mentioned I may have a problem producing milk. The reason she gave was because I was diagnosed with PCOS (polycystic ovarian syndrome) and it was just harder for women with hormone imbalances to produce milk. She recommended some herbs for me to take when I got out of the hospital."
Despite Jillian’s risk factors for failed and delayed lactogenesis II [copious milk production], which were identified by the IBCLC-lactation consultant, she was encouraged to exclusively breastfeed.
Her notable risk factors included:
- Borderline Diabetes
- Infertility issues
- Having small, widely spaced nipples with minimal growth during her pregnancy
- Being a first-time mom
- Undergoing an emergency C-section
As defined on WebMD, Polycystic Ovary Syndrome (PCOS) is a problem in which a woman's hormones are out of balance. It can cause problems with your periods and make it difficult to get pregnant. PCOS also may cause unwanted changes in the way you look. If left untreated, over time it can lead to serious health problems and complications, such as diabetes and heart disease.
Even the biggest advocacy organization for breastfeeding, La Leche League International, states the following:
"The research is in its infancy, but it does seem clear that for some of the women — especially those with early onset of the syndrome — there may not be enough glandular tissue to produce adequate milk. When this is evident before pregnancy, the woman is considered to have hypoplasia of the gland. Some women seem to have normal-appearing breasts that simply don't respond to the hormones of pregnancy and so do not experience the normal multiplication of milk-making alveoli; they may describe little or no breast growth during pregnancy."
Not only did Jillian have PCOS, but she had little breast growth during her pregnancy.
These two factors alone should have been serious warning signs for the nurses, lactation consultants and other medical "professionals" who took care of Jillian and her infant son Landon.
"Landon cried. And cried. All the time. He cried unless he was on the breast and I began to nurse him continuously. The nurses would come in and swaddle him in warm blankets to help get him to sleep. And when I asked them why he was always on my breast, I was told it was because he was 'cluster feeding.' I recalled learning all about that in the classes I had taken, and being a first-time mom, I trusted my doctors and nurses to help me through this – even more so since I was pretty heavily medicated from my emergency c-section and this was my first baby. But I was wrong. I’ve learned I have to be my child’s number one advocate.
Did you know newborns aren’t supposed to cry all the time? They’re supposed to eat and sleep and dirty their diapers. I had no idea that he was inconsolable because he was starving — literally. And when a baby is only on the breast, how do we gauge how much they’re actually getting out? Sure, there should be wet and soiled diapers, and weight checks, right? And where is the limit as to weight loss and a minimum for the diapers changed?
So we took him home ... not knowing that after less than 12 hours home with us, he would have gone into cardiac arrest caused by dehydration. And the best advice I was given by one of his NICU doctors while he was on life support is sure breast is best, but follow with the bottle.
This way you know your baby has eaten enough ... if only I could go back in time.
I still have many, many days of guilt and questions— what if I would’ve just given him a bottle? And anger because how would I have known. I remember when Stella was born, and she was always quiet. I kept asking the nurses what was wrong with her. They said nothing. She’s doing what she’s supposed to. Sleeping. Eating. And it was then that I realized that it wasn’t normal for a newborn to cry as much as Landon did. He was just crying out from his hunger. But I didn’t know. I should’ve known. I still struggle daily feeling as though I failed him.
That little boy gave me ten of the most incredibly life-changing months. I’ve been humbled. Challenged. My relationships have fallen apart. Some have come back together. I’ve learned forgiveness. And the true meaning of 'life is short.' I love hard — to a fault. But I couldn’t live with myself knowing his death was in vain. I’ve learned so many lessons. I’ve learned the true meaning of compassion and unconditional love."
So how can another new mom know whether or not her infant is being sufficiently nourished in order to prevent such a tragedy?
According to Fit Pregnancy, there are several indicators, but here are two that are easy to monitor:
1. Monitor your baby's weight gain.
In the first week after birth, it's perfectly normal for the baby's weight to fluctuate.
However, if a baby loses 10% or more of their weight, you should go to your pediatrician immediately to make sure everything is OK.
2. Monitor your baby's diapers for signs that enough is going in to send something out.
Babies should be producing at least six wet diapers per day by day six post-birth and four stools per day by day four post-birth.
And while the first bowel movements are typically black and sticky, they should be green by day three or four and yellow by day four or five. The consistency of these stools should be seedy or watery.
Please keep in mind that parenting is hard, scary work, especially when you're a new mom or dad.
There is no manual because, no matter how many books you read, every child is different.
If you have any concerns, always seek the advice of a trusted pediatrician, and NEVER feel guilty for not instinctively knowing what to do. The fact that you're even reading this and concerned makes you a great parent.
Everyone will have their own opinions, and unfortunately, they will feel all too free to hurl them at you non-stop. It can be agonizing to try to figure out which one is "right."
The one that is almost always right is your gut. Your mama bear instinct.
We are so grateful to Jillian Johnson for opening up to the world about her tragic loss and hope that this will ignite an important dialogue about breastfeeding, bottle feeding and the dangerous mommy-shaming that still surrounds both.
In loving memory of sweet baby Landon, here is his parents' memorial video: