Grieving is a painful thing - especially when it involves the loss of a child.
My sister and brother-in-law lost their seven-month-old baby girl, Maeve, just over a month ago, after a long battle with complications related to Noonan Syndrome. Maeve was born with a laundry list of health problems including several congenital heart defects, lung problems and serious issues involving acid reflux.
Maeve spent the last eight weeks of her life in a hospital crib due to those complications. It was a heart wrenching period that involved eight surgeries (including several open-heart procedures), heart bypass machines and ventilators, chest tubes and two incidences of cardiac arrest - one ultimately fatal.
As I've said before, we had no idea my niece was coming into this world with all these challenges until the day she was born. That sweet baby girl was born two weeks early, in a fluster of rush and panic. Maeve scored a one on the Apgar Score in her first seconds of life - minutes later she only climbed up to a four.
Needless to say, my sister and brother-in-law were heart broken and shocked when discovering they learned about Maeve's critical health problems.
Like the time before her death, Maeve spent the first few weeks of life in a hospital. She was at Northside Hospital in Atlanta for three weeks - the whole time doctors poked and prodded her to try and get to the crux of the problem. Eventually an expert questioned Maeve's parents and grandparents about any hereditary problems - any trends and troubles noticed on either side.
And neither parent or grandparent had a clue as to what could be responsible for all the heartache.
Brigid and Steve both come from healthy stock - Brig descending from strong German/Irish people and Steve coming from hardy German/Polish folks. And therein lies a coincidence that medical professionals suspected responsible for Noonan Syndrome.
It turns out Noonan's is occasionally associated with people from Germanic backgrounds - and Brigid and Steve both had ties to the Fatherland.
This suspected conclusion has weighed heavily on the entire family - because any couple with a hereditary link to Noonan Syndrome has a 50% chance of conceiving a child with the illness.
And losing Maeve was a grief no one should ever have to bear once - let alone twice.
Before my niece was even laid to rest, her parents began wondering about the possibilities of having more children. My brother-in-law was determined to get an appointment with the geneticist that was booked up for the next seven months - determined to get the blood work done that would solve a very painful riddle.
Brigid and Steve had their blood work done two weeks after Maeve passed away. A nurse in Atlanta had no idea how precious those vials were as she filled them up with crimson red life and sent them to Baylor.
Today, on their four-year wedding anniversary, Brigid and Steve celebrate the discovery that neither of them are carriers of Noonan Syndrome.
The news opens up so many painful whys. Why did Maeve have to get Noonan Syndrome? Why did her case have to be so severe? Why did Brigid and Steve (and the rest of the family) have to go through such a devastating event?
We we will never know the answers to those questions.
But today, we finally know the answer to one question that threatened the very possibility of a lovely, loving family.
Today, as a young couple in Atlanta celebrates four years of love and heartache, they celebrate a marriage that has already endured more than what some people can handle in 50 years.
They reflect on the many gifts and challenges of time, they honor a life they briefly got to love and live through, and they look forward to the future and the blessings they can embrace with happiness.
Thank you for your comment on my blog. I am so sorry to hear about your little Maeve. My thoughts are with you and your sister and brother in law. It was so interesting to read about your Maeve, and how similar some of her experiences were with mine. My daughter also suffered from heart problems and severe reflux. She actually had pneumonia (probably due to reflux aspiration) 4 times. We also coincidentaly had the genetic testing done for her syndrome (CdLS) just a couple days before she died, and got the results about a month later. Neither my husband nor I carry the CdLS gene, it was most likely simply a random mutation (although it is impossible to test for germ line mosaicism and that still can't be entirely rulled out). We did become pregnant again about 8 months after she passed away and now have a totally healthy 1 year old boy. He does not replace my daughter, but he has truly helped us heal. It is so hard to lose your first child. They make you parents, and suddenly you become a parent without a child. Having another helps so much to ease that pain.
Thank you for being such a wonderful aunt. It means so much to your sister that you remember Maeve. Please put them in contact with me if they need to talk.
All the best
Maeve Lillian and Isaac's mommy
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