Erin wrote the following FFF Friday in honor of May being X & Y Chromosome Awareness Month. She tells me, “1 in 500 children have X & Y Chromosomal variations that present in many different ways: speech delay, low muscle tone, behavioral problems, academic achievement, dyslexia, dyspraxia and attention deficit disorders. It is thought that 20 children are born each day with X & Y variations, but only 5 will be diagnosed in their lifetimes. Detection of chromosomal abnormalities can help children receive treatment and intervention to help them become healthy, confident and able to succeed.”
I am honored that Erin chose to share her story and advocacy for this condition with the FFF community, and hope you find her story as informative and inspiring as I did.
For more information on X & Y Chromosomal variations, Erin recommends visiting The Focus Foundation Website.
When my husband and I decided to enter into the world of parenthood, we had some pretty lofty expectations of perfection. I’d get pregnant easily, I’d have a natural birth, I’d breastfeed, and cloth diaper. We would be a, blissful, radiant, perfect family.
I did not get pregnant particularly easily. When I did, we were thrilled, At sixteen weeks, I had the fairly standard AFP (Alpha Fetoprotein) test done. The test came back with an elevated risk for Downs Syndrome. I scheduled a Level II sonogram, which revealed nothing that would suggest a chromosomal abnormality about our baby. A month later, at a follow-up scan, a marker for Downs Syndrome was found, and we scheduled an amniocentesis for additional information. We learned that our daughter has Trisomy X (also known as XXX or 47,XXX), an extra sex chromosome. It is among the most common of chromosomal variations, and it is thought that only 30% of women with the variation will actually ever be diagnosed as having it. It can cause potential speech and language difficulties, and muscle coordination and tone issues.
After twenty-six hours of labor (preceded by 3 days of prodromal labor), I gave birth to my daughter at the hospital, and she was immediately evaluated by the NICU team and declared “perfect.” I did miss the fresh from the womb moment, but being sure everything was fine clearly overrode that.
I was encouraged to try and breastfeed, but my first memories of these moments are hazy (and thankfully captured on film.) I know that I felt like not much was going on, and the baby and I were exhausted. We were moved up to the mother/baby ward and I kept attempting breastfeeding, but my daughter didn’t seem particularly interested, and I was very interested in sleeping.
About seven hours after her birth, a nurse came in and declared that she was jaundiced. I was encouraged to keep feeding her, but she was under the bili-blanket a few hours later, where she remained for the next three days. Before I was discharged, I saw four different lactation consultants. The first smashed and grabbed and I felt angry and unhelped. The second told me that my daughter had a weak latch and was thrusting with her tongue, and then clamping down with her gums to keep my nipple in her mouth. Ow. The third was another masher/grabber, and the forth actually helped us. The three times she saw me were the only three times I ever felt like I successfully breastfed my daughter.
My daughter’s jaundice kept getting worse, and we were told we needed to supplement. My husband finger fed our daughter formula from a tube taped to his finger while I pumped and cried. Hardly the perfect breastfeeding experience I’d imagined.
I was discharged, and my daughter was admitted to the pediatric unit because her jaundice continued to get worse. In Peds, she was in an isolette except when I took her out to feed her, which could sometimes take an hour and a half before she seemed satisfied. The lactation consultant asked me if I had been on any medication prior to giving birth, and I told her that I had been medicated for PCOS. She suggested I should start taking that medicine again, as it could help with milk supply. I continued to pump and finger feed what I could get, supplement with formula, and kept trying to get my daughter to the breast.
After three more days in pediatrics, my daughter was finally discharged and we got to come home. And that’s when the “cluster feedings” started. Only they weren’t cluster feedings. They were five hour nursing sessions that only ended when I had to go to the bathroom, and then they’d start again. My daughter would fall asleep at the breast, but I plodded on, determined to make breastfeeding work. My local LLL leader came over (an hour drive for her!) and tried to help too. I visited another lactation consultant. In the hour that I nursed, my baby transferred a quarter of an ounce. In my stubborness to breastfeed, I was missing that I wasn’t actually feeding my daughter.
I switched to pumping, but yielded meager results, even with the hospital grade pump, and after a few days of sobbing at 3 in the morning while hooked up to the pump to get an ounce and a half every two hours, my husband convinced me that what my daughter needed most was a mother that was healthy enough to take care of her, which I was not capable of doing. My every two hour schedule had me falling apart at the seams. I couldn’t not pump, or my supply would dwindle almost immediately, and I couldn’t hold my daughter and pump. A wonderful friend led me to this site, which I read a lot of during pumping sessions, and I slowly came to the realization that I needed to stop pumping and be a mother. I couldn’t do both.
Looking back, there were a lot of factors working against us. The lactation consultants at the hospital couldn’t “diagnose” a muscle issue (for fear of losing their jobs, as I learned later,) which clearly my daughter had. She struggled with bottles for the first few weeks, as well. There was no way that she was ever going to latch onto a breast efficiently enough to get food. Her inability to transfer likely had major influences on my initial supply, as, I’m sure, did my PCOS.
I still feel pangs of guilt, 9 months later, about not being able to breastfeed. The culture of “breast is best” is certainly pervasive enough to cause a lot of negative thinking if you’re unable to breastfeed. But what I can do, and what I do every day, is be the best mother that I can be. My daughter won’t remember what food she ate for a few months at the beginning of her life – she will remember how much her family loves her, and how much we celebrate her.
Celebrate your own child – and your own infant feeding experience – by writing a post for FFF Friday. Email me at email@example.com.