Just a boy and his mama
Like many boy moms, when I found out my second pregnancy would be wrapped in blue, I was sad. I grieved the daughter that I may never meet. I grieved my dreams of buying bows and dresses and having long conversations about boys. But you know what, day by day, I fell more and more in love with the little boy in my belly. To my boy mom comrades- we are amazing, we are exhausted, privileged and loved beyond measure. We get to raise the next generation of young men who will be better husbands, fathers and partners than those that came before us. This is a privilege, without a doubt.
If you knew me 3 years ago, then you might know that my first pregnancy was uncomplicated but ended in a traumatic birth. In an effort to avoid that experience, my second pregnancy was followed more closely. At 30 weeks a growth scan revealed that baby boys femurs weren’t as long as typical. At <2nd percentile, this put his overall growth as restricted and we were sent to the MFM (maternal fetal medicine). The ultrasound at the MFM only confirmed that his femurs were measuring <1st percentile and this persisted throughout pregnancy. Not cause for alarm, but not ‘normal.’ At birth, he was small at only 5.5lbs but was born 3 weeks early. He had feeding issues which are now known as reflux and milk protein allergy. At 4 weeks the pediatrician called that his newborn screen was abnormal. His TSH (thyroid stimulating hormone) was in this intermediate range so it needed retesting which only confirmed its elevation. Retesting at 6.5 weeks confirmed, but T4 was normal, so hopefully this is only transient. The endocrinologist says we simply don’t have data to know if this could have impacted his development, but elevated TSH means the brain needs more T4. AAP (American Academy of Pediatrics) guidelines recommend putting these kids on levothryoxine by 2-4 weeks of age. This is not a new guideline so the last case series on these children was published over 20 years ago. Some of them had speech delay. Ok, that’s manageable. But really, we don’t know what we don’t know.
When Conor was born he was just like my first. He was a sleepy baby and he cried every time I tried to put him in that bassinet just like his brother. The nurse who took him to the nursery so I could get 2 hours of sleep even commented that I had a fussy one. But once we got home on day 4, all he did was sleep. He never cried and when he did, he sounded hoarse (we attributed this to reflux). And he was always so cold that we put a space heater his room to keep him warm. The polar opposite of our first, we thought ‘hey, we got an easy one this time.’ By the way- never think that as a parent, you are only setting yourself up for disappointment. There are no easy ones. Kids just have different ‘easy’ phases. This is a fact. Once we got Conor on therapy (levothyroxine) and the right dose (25mcg) we held our breath and waited. Slowly he started crying and waking up and just generally being more of what we expected with a newborn. But his still loved (and loves!) to sleep.
As Conor has opened up his personality, like the petals of a flower, it is multifaceted and simply beautiful. He is so sweet, happy, loveable, just the greatest little baby. Every laugh is a belly laugh and he could play with balloons for hours. When he gets excited his entire body flaps, it’s just the cutest thing ever. I’m so proud and blessed to be his mama.
As a genetic counselor, I have questioned many aspects of my experience with my second son. We have had to disagree repeatedly with doctors. Being told he couldn’t be allergic to milk, only to have him experience an allergic reaction that led to an anaphylaxis diagnosis (epi-pens and all). The pediatrician who received the NBS (newborn screen) results didn’t immediately call us (our older sons pediatrician and someone we trusted very much). Conor’s pediatrician told us ‘not to worry about this’ and never mentioned AAP recommend treating by 4 weeks to avoid any chance of developmental delay. Classic congenital hypothyroidism is one of the primary causes of intellectual disability and is completely avoidable with levothyroxine supplementation by 2-4 weeks after birth. Newborn screening is designed to identify these babies at birth and get them on therapy in time to prevent irreversible neurological damage (required for myelin development). At 8 months I became concerned that he was making noise but not babbling and his gross motor skills were exactly where Calvin’s were, but his fine motor also seemed stalled like his speech. After being told by multiple doctors this was normal, a couple of friends of mine suggested I self refer to BabyNet which has confirmed language and fine motor delay and want to evaluate his hearing and eyesight further. We also are going to see a geneticist in May that I know and trust. I feel heard. I feel empowered. From my friends I’ve had for 3-20 years and my coworkers who encouraged me, this was a team effort and I am so great full for the path my life has taken to lead me here.
Now that I have the support I was needing, I can now reflect on why this was the little boy I needed. All mothers experience challenges. Being a new baby is tough. But not feeling heard, was like torture. I am an expert in nuance. I have worked in genetics now for 9 years. I have indulged in all of the aspects in between the black and white stripes of genetics. I do not blame the doctors for not knowing exactly how to manage my son. General practitioners are not equipped to know everything about everything. The pressure from 3rd party payers to spend less and less time with patients has only produced quantity, not quality. It is very disappointing that this is the best this great country has to offer. But Conor is my son. He is beautiful and wonderful and perfect. But I am an expert in nuance and I will always be here, ever watchful to be sure that he can achieve his full potential. Knowing that someone else that is an expert in this area is going to evaluate my son is giving me the freedom to relax and enjoy Conor.
I have always told myself that if my children are happy, that is all that matters. Thankfully, Conor is happy.
MumGene 