I knew I would have to become more educated if I was going to be a better, stronger caregiver and advocate
When you hear the word caregiver, do you think of a man or woman? Interestingly, the definition of caregiver doesn’t reference gender in any way even though the primary caregiver is more often than not a woman.
Caregiver: A family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.
I learned at a relatively young age, however, that caregiving and advocacy were important for men as well as women. Soon after my wife and I started dating (while in our 20s), I learned that she had a genetic disorder called neurofibromatosis (NF). She had the physical manifestations common with NF1 such as café au lait spots or flat, light brown spots on her body (6 or more is a strong indication of NF1); plus, she had a couple of tumors—visible, pea-size ones as well as some non-visible ones in various parts of her body. She was also on the shorter side which could have just been hereditary but is common with NF as well.
Within a couple weeks of dating, I made my first trip to the hospital with her to discover she suffered from severe, debilitating migraines. These also could be hereditary but we strongly believe that her NF causes hers to be much worse than anybody else in her family. The nurses and doctors ran through a battery of questions which culminated into tests to rule out meningitis. Over time, this more often than not led to the suggestion of doing a spinal tap. I was in over my head at this point, but I knew with some certainty that she didn’t have meningitis. This first hospital visit left me with a lot of questions.
Becoming an Empowered Caregiver
I knew I would have to become more educated if I was going to be a better, stronger caregiver and advocate in the future. I distinctly remember one hospital visit, with the familiar and routine battery of questions, where the notion of a spinal tap was brought up again. I vehemently tried to make a case against it. Unfortunately my fiancée (at that time) was too sedated to speak her mind and her mother sided with the doctor. I remember the doctors shooing me out of the room to get something to eat but guaranteed me that my fiancée would not be taken for the test until I got back. By the time I got back, however, she had just come back from her spinal tap. I vowed never to allow myself to be pushed aside again when trying to advocate for someone…even if that meant disagreeing with a family member.
Numerous hospital visits (some requiring admission) eventually led to me learning how to give my now wife intramuscular (IM) injections to help control the migraines when they were at their worst. I also, on a number of occasions, had to take a strong stance with doctors who didn’t know my wife’s medical history regarding their recommended course of treatment.
Our Family Grows
Ten years after the hospital visit that kicked off my path towards becoming a caregiver, my wife and I found out that our first son would have a birth defect called congenital diaphragmatic hernia (CDH). This is technically not a rare defect. It occurs in 1 in every 2,500 pregnancies with approximately 1,600 per year in the US. Unfortunately, there is only a 50% survival rate once diagnosed with CDH. Since we found out at 37 weeks gestation, we had 3 weeks at most to learn everything we could about CDH to be able to start advocating and become strong caregivers before our son was even delivered. Those last 3 weeks were a whirlwind as we had to make potential life or death decisions for our son (whom we had never met) with respect to a birth defect we had never heard of.
After lots of long days and nights at my son’s bedside, countless late night phone calls with the neonatologist on call, and more than a few heated discussions with nurses and doctors, my son finally came home after (what I now know to be a short) 29 days in intensive care. We were blessed to be able to bring our son home. But even though he made it through his first 2 major CDH repair surgeries, CDH is often a lifelong struggle. At the very least, we have to be very cognizant of the sometimes life-threatening long-term effects of this birth defect such as reherniation, twisted bowels, and partial loss of hearing or vision—just to name a few.
Living with CDH
I can’t even count the number of times we rushed to the ER because stomach flu symptoms can be very similar to reherniation symptoms, and we had to be positive since reherniation can be life-threatening. Very few doctors want to even touch, let alone evaluate, our son once he was given the CDH label. Most doctors only know of CDH from text books, and even if they wanted to, I wouldn’t let anyone who didn’t know what they were doing even touch my son. So we learned in short order that if ever there was an emergency the only course of action was to travel over an hour to the hospital where our son’s life was saved in the first place.
I was fully prepared to be my son’s advocate and do whatever was necessary to provide the care he needed. From making sure he had physical therapy to the prescription medicines he needed to give him the best chance of having a “normal” childhood, I would do anything. However, I was not fully prepared for the 20-week level 2 ultrasound of our second son where we found out he would also have CDH. The chance of having a second child with CDH was only 2%.
And yet here we are again.
Baby Number Two
This time around, we didn’t have to do the research. I unfortunately had 3 years of research under my belt. I knew the neonatal team, the surgeon, and even some of the NICU nurses who would be caring for my son. Going through the CDH roller coaster one time definitely didn’t make it any easier to do it again.
My second son’s birth defect couldn’t have been more different than my older son’s. My first son was born without a diaphragm at all while my second had a partial diaphragm. Even though my son was in the hospital for 7 weeks this time, that didn’t mean I didn’t have to play the role of a caregiver during his stay. I have the utmost respect for the nurses, doctors, and therapists but no one knows your child like you do.
For example, it is extremely common for speech therapy to be involved with children in the NICU who are having trouble taking a bottle as a result of being on a ventilator for some period of time or for any number of other reasons a child is not able to take a bottle or breast feed at birth. My son qualified on a couple different levels. We had to teach him how to take a bottle as he was getting nutrition through an IV initially and then a NG tube after his hernia repair surgery. My son was having trouble with the breathe, suck, and swallow concept. So speech therapy stepped in.
They tried different techniques for holding my son, different nipples, different ways to pace my son while drinking, and even different milk/formula consistencies. In the end, we actually felt that our son was doing worse as a result of all the changes even though the therapist was well intentioned. It got to the point that speaking to the speech therapist about my concerns wasn’t helping. So I had to speak to the charge nurse (the head nurse on the floor) and the Neonatologist on call to basically forbid the therapist from working with our son anymore. It just felt counterproductive to have her involved.
Home at Last
A few weeks later, our son finally came home and now we get to learn (all over again) how to be caregivers for an almost 2 month old CDH survivor who is on a feeding tube (which is completely uncharted territory for us). However, I wouldn’t have it any other way. My wife and my kids are my life. If I have to play the role of caregiver, then so be it. It isn’t going to be easy. In fact, I expect to go through periods where it will be downright hard or near impossible. But as a family, we will find a way. We always do.
- 12 November 2014 at 2:11pm
- A Year in the Life of a Caregiver of a Child with a Rare Disorder | SirenSong
[…] as I said last year in my blog about being a dad and a caregiver [link to: ], I wouldn’t have it any other way. My wife and my kids are ...