While I try to answer questions about Judah and our story as well as I can, sometimes, the answer is long and complicated or I just don’t have the mental energy to answer them because the answer is painful. So I thought I would put up a post that I can refer people back to in those cases. This post will be updated periodically to reflect the most recent information. The latest update was done on January 24, 2022.
What happened to your baby?
Judah was born without kidneys. This is known as Potter’s Syndrome, and his type was called bilateral renal agenesis. There is no known cause and it is often called a “fluke” although I think they may have recently identified a gene that causes it. Whether or not we or Judah had that gene, I don’t know. Usually, in cases of Potter’s, the baby is stillborn. Because the kidneys take over the production of amniotic fluid around 16 weeks gestation, the baby eventually runs out of it. Without amniotic fluid, they can’t practice breathing to develop their lungs and their growth is extremely restricted. Judah was diagnoses at our mid pregnancy ultrasound and we were told our only options were termination or comfort care for the remainder of the pregnancy. We searched the United States for a different solution and found one at Cincinnati Children’s Hospital in a medical research program. The procedure is called amnioinfusions and is the process of replacing the lost amniotic fluid with normal saline to give the baby the fluid needed to grow and develop their lungs. It worked, just barely, for Judah and we did infusions over 9 weeks, three times a week. I also had a port placed in my abdomen to prevent infection and (thought at the time) preterm labor.
Judah was born at 33 weeks and 4 days and weighed 4lbs 3oz and was 16 inches long. He has to be resuscitated and put on a ventilator at birth. He had a very rocky start but was doing extremely well by 3 months old and it was thought to be safe to send him to a hospital that was supposed to have a superior nephrology (kidney) department closer to home in Texas. We transferred him mere days before Christmas.
However, at home in Texas, the hospital made a lot of mistakes that led to him being sick over and over again. We also believe that a few weeks before he passed away, he developed food protein induced enterocolitis syndrome (FPIES) that led to his constant throwing up. When we brought up the possibility of food allergies/intolerances with his physician, he told us that babies his age (almost 6 months) couldn’t be allergic to the mixture of breastmilk and formula he was on and that he wasn’t going to order a GI (gastrointestinal) consult when we asked for one because “you don’t want to go down that rabbit hole.”
A week or so later Judah passed away from what we (his parents) believe to be a massive stroke due to dehydration. This was never confirmed however because we refused an autopsy. After all they had put him through, we wanted them to leave him alone.
Did you know he didn’t have kidneys before he was born?
We did. We went to a maternal fetal specialist for our 20 week ultrasound after some concerns came up on our blood tests. They were completely unrelated and turned out to be nothing. We were told after the ultrasound was done that our son most likely didn’t have kidneys. They couldn’t see very well though because there wasn’t enough fluid and he was stuck in my right hip. We were told it could also be a placenta problem, sent home to drink tons of water for 2 weeks, and then come back and check again.
No kidneys was confirmed at 21 weeks with another ultrasound and then again at 23 weeks with an MRI.
Why didn’t he just get a new kidney?
He was too little. When a child/baby needs a new kidney, it has to come from an adult. A child’s kidney, for whatever reason, will not grow with the child, leading them to need another kidney very soon. An adult kidney is about the size of your fist. Now think about trying to fit that inside your average 20” newborn. My son was 4” shorter than the average newborn and definitely didn’t have the room. As such, the requirement for kidney transplant in a child is at least 20lbs which comes out to about 2 years old for these kiddos since they’re usually pretty growth restricted due to having to have their fluids restricted.
Judah was 10lbs when he passed away at 6 months old, meaning he was halfway to transplant.
Will you/did you sue the hospital?
No. In short, it would’ve been too hard to prove. The state of Texas makes it really hard to prove medical malpractice after years of it being too easy. You now how to prove with 51% certainty that malpractice occurred and it would’ve come down to our word against the hospital’s, especially since no autopsy was performed. We also had two years from the date of injury to bring the suit.
We consulted a lawyer a little under two years later and he told us that he couldn’t take on the case because he didn’t believe it was one that could be one. He consulted with other lawyers from other practices and within his own as well and they all said the same thing. The biggest thing for us to consider, he said, was that the hospital would paint it as our fault and that, because he had a condition with only two survivors in the world (at the time at least), that they would say he was supposed to die anyways. He also told us that if we did find someone to go forward with it, it would most likely be around a two year process.
Lastly, around the time we consulted the lawyer, I heard God told me to let it go. Before Judah passed away, we took him out the garden outside the NICU and sang praise songs and prayed over him. The doctor who would have been one of the primaries named in the lawsuit and who called Judah’s time of death, told us afterwards that it was one of the most beautiful things he had ever witnessed. I heard God tell me I could not take that away from him by suing him.
What is FPIES?
FPIES stands for food protein induced enterocolitis syndrome. It’s a very rare and very new diagnosis. Essentially, it’s a rare form of food allergies where the gut can’t break down the proteins in certain foods. Every food, regardless of it’s category of a carb, protein, or fat, contains (at least) a small amount of protein. Our son, Arthur, was diagnosed with this condition as a baby and we believe Judah may have had it as well. It causes vomiting, diarrhea, rashes, gas, and can lead to failure to thrive. In the cases that are much worse, these sweet kiddos can vomit so much they go into shock. Fortunately, Arthur never did (although he got close once). And we believe it’s what caused Judah’s dehydration that led to the stroke that caused his death. For more information about FPIES, you can check out www.FPIES.org.
What special needs does your son have?
This is something my husband and I have chosen not to share for privacy reasons. While we are okay sharing that he has FPIES (explained in the FAQ above) because we need to be careful with what he eats, his special needs are not something we’re comfortable sharing at this time. We don’t want him to be stigmatized because of it and we’re trying to decide if it should be left up to him to share what it is that makes him the special and unique way that he is.
What chronic illness do you have?
I was diagnosed with asthma as a baby. It doesn’t affect me much in my day to day life, thankfully. However, if I am exposed to cigarette smoke, it does trigger an asthma attack. Thankfully, I carry an inhaler with albuterol (a steroid) to open my lungs back up if this happens.
In January of 2020, after being sick with no explanation for 6 months, I was diagnosed with polycystic ovarian syndrome (PCOS), which seems to run in my family. For me this means insulin resistance (which could lead to diabetes), hair loss, chronic fatigue, uncontrollable weight gain, unwanted facial hair, gut problems, high testosterone, intolerance to warmer temperatures and the inability to cool down, adrenal fatigue, high cholesterol, long and irregular menstrual cycles, and incredibly heavy periods.
I have also been diagnosed with generalized metabolic disorder. Basically, this just means I have other symptoms that don’t really make much sense, and, in cases like that, they just group them under GMD.
I also have a gene mutation that doesn’t allow my liver to detox correctly. This can lead to liver disease so I try and eat a whole food diet, don’t drink alcohol (cleared by the liver), limit medication (since many need to be cleared through the liver), and take supplements to help try and detox my liver like it would without the mutation.
Are you doing all this for money?
When I get this question, it’s never phrased this nicely. It usually comes along the lines of, “So what, you’re making a profit off your son’s death? You need help.”
I want to be very, very clear – I have never made a dime off the fact that my son died. There are several things you may see on my social media profiles that, if it’s read the wrong way or out of context, it may seem like I’m asking for money or making a profit off of my son. Nothing is further from the truth. The biggest one I assume is what people think I’m using to make money off of him is my Bonfire link to my “store” that has various Project Judah Bear shirts and merchandise from previous years. While these are available year round and ones from previous years are still available for purchase, every single penny from anything sold on my Bonfire store goes to Project Judah Bear. If something is sold during a time where Project Judah Bear isn’t active, the money does not move from the Bonfire account until we are ready to donate it again. And the link is left up year round because, honestly, it’s easier as a busy mom to just leave it and all has have it there then to try and remember to take it down each year.
On my Instagram, there is also a story highlight called “Portraits”. On occasion, I get messaged asking if I do portraits. I have been working on setting up and keeping boundaries in my life and so I added that highlight after I took on a few too many at once, first to see if there was interest in more portraits and then to very clearly state that I would only being taking on, at a maximum, five per month and that if one was commissioned, it would likely take 2-3 weeks to get it back. Since then, I have done a total of three portraits (as of January 2022). All three mamas reached out to me personally and other than putting up the stories, I have not advertised my services as a portrait artist on Broken Beautiful Mamahood. That is not the point of the account so advertising will never be done there.
I do have a hope that one day, I will be able to work as an artist. But right now I am a busy mom with a special needs kiddo and a one year old and I do not have the margin in my life to handle that, managing my social media, and writing a blog. If and when, I start a business as an artist, it will be done on a separate account.
Finally, you may have seen me share some posts from Zoe Faith Inc and that any purchases made during a certain week would go back to our family. We told Zoe’s mom we wanted to donate that money back to Cincinnati Children’s Hospital in Judah’s name, since we have an agreement with the hospital that any funds donated to them in his honor will go directly to the amnioinfusion research program to help others babies with conditions similar to Judah. Not a single penny was sent to me – Jen, who runs Zoe Faith Inc and The Carried Project, sent the money directly to Cincinnati Children’s in Judah’s name.
I understand there are scammers in the world and people who exploit their stories (and even pirate others’ and say they are their own) for money. Let me assure you, that is not what I’m doing. Broken Beautiful Mamahood grew as the result of a viral Instagram reel and I very carefully and prayerfully considered what to do with the attention my account was receiving. During that time, I was led to Psalm 126:5-6, which says,
“Those who sow in tears shall reap in joy. He who goes forth and weeps, bearing precious seed to sow, shall come home again with rejoicing, bringing his grain sheaves with him.”
Psalm 126:5-6. MEV
In the moment that I read that verse, I heard God tell me my tears were not in vain and that my grain sheaves that I would bring to heaven with me would be other loss moms. And that He had given me a platform to care for and minister to these moms and I needed to use it. This is what Broken Beautiful Mamahood is for. If donations are ever asked for, they will go directly to the source, not into my pocket.
Why would you share about this? This should be kept private.
I understand why you may think that way. This is something that is very, very personal to me and people don’t want to be reminded that babies die. But here is the harsh reality – we live in a broken world and because of that, babies sometimes die. And my sons, Jack and Judah, died.
After our miscarriage with Jack, I kept it to myself. I told no one. I put on a happy face like I was perfect and my life was perfect and my marriage was perfect. And because of that, my mental health was destroyed and I felt so alone.
When Judah was diagnosed, I told my friends and family but never talked publicly about it because I thought it wasn’t appropriate. However, word spread and the phone calls and text messages became too much to handle, so my older sister created a Facebook page, called Prayers for Baby Morgan, so we could instead post updates instead of individually messaging everyone.
After Judah died, I decided I was done being the girl who never shared her real life and only showed the happy parts. The happiest part of my life was gone and, from how I was suffering, I knew awareness needed to be brought to how life was lived after going through the unimaginable. Because of this, my mental health has done much better this time around and I have received so many messages from other loss moms telling me how my openness has helped them to keep going.
And even if I only ever got one message to this affect, it would be worth it. And I would keep sharing just to be a road map for this other mama.
