We took the girls to a birthday party on Saturday, and saw some friends, several acquaintances, and met new people including a mom of four boys including identical twins. Her youngest – not one of the twins – had a patch surgery just like D’s. I got asked many of the same questions by several different people, including:
- How old is she, really?
When it’s a stranger who asks, I usually say “she’s one.” Daphne will be 18 months old on Sept 2. She was three months and a few days early, so her corrected age is almost 15 months. She looks like she could be 6-9 months, except she cruises and talks. It catches people by surprise.
- Was her heart problem related to prematurity?
Absolutely not. Her VSD was diagnosed in utero during a fetal echo. As it turned out, she also had an ASD and a smaller muscular VSD which was not fixed, and will close on its own. Monoamniotic twins (often referred to as mono/mono, meaning one placenta, one amniotic sac) have a higher rate of heart defects. We enrolled D in a clinical trial to investigate whether genes are responsible for congenital heart defects. They took some blood after her surgery and will analyze her DNA to see if the defect had a genetic cause.
- I know somebody with a hole in his/her heart who didn’t need surgery.
D’s VSD was large enough that a large quantity of blood was shunting back to her lungs. That, combined with the fact that she had premature lungs, caused her to need breathing assistance for many months. Most 28-weekers don’t require oxygen for as long as she did. When she was diagnosed with pulmonary hypertension, doctors didn’t know if it was due to prematurity or the heart defect. Her membranous VSD was not going to close on its own, and her health would be seriously affected if it hadn’t been corrected.
- Is the kidney failure related to prematurity?
Not exactly. When Leah died, Daphne’s blood supply got cut off and her kidneys were deprived of Oxygen. A few more minutes and other organs (most importantly, her brain) would have been affected. She had to get over that initial shock before her kidneys were fully developed, and that made her prognosis even more uncertain. She has 40-50% kidney function now and is monitored every three months.
- When will she catch up?
I don’t know. Nobody knows. Most micropreemies don’t actually catch up by two. She had more complications than your average micropreemie. She’s doing much better than anyone expected.
- Why did Leah die?
We don’t know. My doctors don’t know. It wasn’t a cord accident – which is the main reason mono/mono twins are so high risk. It was possibly Twin-to-Twin Transfusion Syndrome but we will never know for sure. We do know that if I hadn’t been in the hospital under 24/7 monitoring, Daphne would have died too. She will always be a part of her family. We miss her and think about her every day.
- Was Daphne breastfed?
I pumped milk for her for five months. My supply was pathetic but in the beginning when she took so little, she “drank” breast milk exclusively – through a tube, at first. Toward the end of her NICU stay, she got two bottles of breast milk a day. She never nursed because of her heart defect. It was important that she didn’t burn calories unnecessarily. Right before she got discharged, I was diagnosed with thyroid cancer. I knew I would need surgery and radioactive iodine, so I stopped pumping. My thyroidectomy was exactly a year ago, and as of my last check up I am cancer free.
- Is she always this happy?
For the most part. She is a really happy little girl, except when she is teething or when we are giving her Prevacid.