Loghan’s story is more than just a story – it’s a journey! In this multiple part blog series I will discuss, in detail, each of Loghan’s conditions as well as the journey we took to get there. There were ups-and-downs, roadblocks and breakthroughs, and times when people probably thought I was just plain off my rocker. In the end, I did what needed to be done and when push came to shove, I shoved harder because I am my child’s biggest advocate and so are you! Trust your mommy…or daddy gut!
Loghan was born with a congenital diaphragmatic hernia. For those of you who do not know what that is, I will explain in my best MOM lingo. A diaphragmatic hernia happens when the diaphragm muscle fails to close during development. Then, the contents from the abdomen move into the chest through that hole. In Loghan’s case, the hole in her diaphragm was the size of a quarter and a majority of her intestines and traveled up under her left lung making it hard for her to breath and causing her heart and right lung to shift.
To be clear, a diaphragmatic hernia is a life-threatening illness. From what I have read and I read a lot these days, many babies are unable to breathe on their own because their lungs are under developed and because of the crowding in the chest area. Worldwide, about 30% of babies with isolated congenital diaphragmatic hernias do not survive long after birth due to underdeveloped lungs. Scary, right?!
Thankfully, Loghan’s lungs were well developed. However, that could also be one of the reasons for the delayed diagnosis of her hernia. Loghan’s hernia was not diagnosed in utero nor did it present itself at birth as it does in most cases, rather it was found when medical imaging was done for other reasons – I will explain this later on. On January 28th, 2019 Loghan had hernia repair at 4.5 months old, but this is just the beginning of Loghan’s journey.
Here are a few more things I found interesting about diaphragmatic hernias that apply to Loghan (Resource: Genetics Home Reference).
- Congenital diaphragmatic hernia affects approximately 1 in 2,500 newborns.
- In about 1 percent of cases, congenital diaphragmatic hernia has no symptoms (I do not think this is true in Loghan’s case but…); it may be detected incidentally when medical imaging is done for other reasons (This is true in Loghan’s case).
- In 10 to 15 percent of affected individuals, the condition appears as a feature of a disorder that affects many body systems, called a syndrome.
On August 5th, 2019 Loghan was officially diagnosed with congenital entropion in both eyes and epiblepharon in her right eye. Entropion occurs when the edge of the eyelids (bottom eyelids in her case) turn in causing the lashes to rub against the eye. Epiblepharon is a lid anomaly where a fold of skin and underlying muscle push the lashes against the eye. Left untreated, these conditions can cause damage to the cornea, eye infections and vision loss. She also has intermittent Esotropia of the left eye, where her eye occasionally turns inward (“cross-eyed”).
- Eye malformations are relatively rare, occurring in approximately five per 10,000 live births.
We aren’t out of the woods yet! Loghan has quite the following of doctors already and one of them made the suggestion to have genetic testing done due to her hernia, eyes and small size. On August 28th, 2019 we were told Loghan has Neurodevelopmental disorder with or without anomalies of the brain, eye, or heart (NEDBEH) also known as RERE Syndrome (arginine-glutamic acid dipeptide repeats).
The RERE gene is responsible for making a protein that gives instructions that are critical for normal development before birth. According to her geneticist, RERE is a newly discovered condition with only 18 published cases and about 30 cases worldwide. With little to go from, what we do know is that it explains her current conditions.
Now that you know a little bit more about Loghan, let’s start things off by taking a look at my pregnancy.
I will make this short, sweet and to the point. The goal is to fill you in on who I am as a person and my lifestyle. Here we go…
✔ I don’t do drugs. I do consume alcohol but not while I was pregnant. I do not smoke.
✔ I eat pretty dang healthy, prego or not, but I did have my days of ice cream and pizza binges!
✔ I stayed active throughout my pregnancy. I did a lot of yoga, including boga yoga, walking, hiking, biking, and volleyball (just less competitively, the further along I got).
✔ I gained 25 pounds during my pregnancy.
✔ I had nausea until week 16 and heartburn throughout the pregnancy.
✔ I was due Sept. 6th and Loghan was born Sept. 8th, 2018 @ 9:44 AM, 5lb 15oz, 19 inches long!
Now that you have an insight into what my pregnancy looked like, here is a quick rundown of Loghan’s main symptoms.
✔ Projectile spit-up
✔ Blood and mucus in her diapers
✔ Constant fussiness
✔ Slow weight gain
✔ Always looking to the left
✔ Super boogery eyes – on the daily
Lastly, here is a list of doctors’ visits that took place from Loghan’s birth up to her hospital admittance (September 8th, 2018 – January 25th, 2019).
✔ 19 Office Visits
✔ 10+ Weight Checks
✔ 4 Chiropractor Visits
✔ 2 Applied Kinesiology Visits
✔ 10+ additional questions/concerns via My Chart to her pediatrician
That covers the background and a few facts of Loghan’s conditions that will help you understand our journey a little better. The rest of this series you will follow us to appointments and hear conversations and feelings through my point of view. You will see the good, the bad, and the ugly side of this mama on a mission but please understand that everything I said, feelings I had and actions I took were and continue to be out of the unconditional love that I have for my little!
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Up next in this series is Loghan’s Story Part 2: The Symptoms – Explained, and it does just that. It explains some of her early symptoms leading to her diaphragmatic hernia diagnosis and some of the obstacles we encountered along the way.