The family are trusting that God is going to work all this out for his good!
Despite the medical miracles doctors can pull off these days, it can still be difficult knowing your children will face an intense surgery that puts their lives at risk, along with other health complications.
The girls, Erin and Abbey, were born 10 weeks before their due date by an emergency c-section. They weighed just two pounds each at the time and weren't ready for the grueling surgery required to split them apart.
Along with skin, the twins were connected by blood vessels and brain
tissue, meaning dividing them would be risky and extremely complex.
A
team of specialists at CHOP spent the next 11 months preparing the
girls, and when the day of their surgery finally came it took a full 14
hours to separate them. The procedure also made them record setters, as
the youngest twins joined at the head to ever be successfully split.
In the months that followed, both girls underwent even more surgeries to replace parts of their skulls, and physical therapy to strengthen their underdeveloped legs. In November of 2017, 485 days after the girls were born, they were able to go home.
But despite all of the extra care they needed, both at home and at CHOP, being able to cradle the girls on their own was worth it for the Delaneys.
Twins joined at the head, called craniopagus conjoined twins, are some of the rarest in the world. About six sets of twins in 10 million are joined at the head. Heather and Riley are trusting that God is going to work all this out for his good! The girls are doing well. The girls are progressing slowly but surely. Erin is getting a good hang on walking. She is a little unsure but usually up and running. She walked barefoot in the grass for the first time the other day which was fun for Mom to see. Abby is also doing great. She is crawling and trying to pull herself up to stand. She is learning to crawl up short heights and becoming more independent every day. Heather tries to visit the park every so often now that they are more mobile and they seem to like it and especially since the weather is nice.
Due to COVID, the Delaney family has had a rough year. Though they usually go to Philadelphia every six months, this wasn't possible in 2020. When they finally did get to the hospital the family learned that the girls still need some reconstruction done. Mom Heather explains on her blog that: "Right now they still do not have any skull on the top of their heads. I know they look like they do but that is just fluid that has made them look like they have a skull. They basically have a huge soft spot on their heads that will never close. We need to have a "synthetic bone" type plate put in to not only protect their brain but also give their brain a more "normal" environment. When I say a more normal environment I mean their brain needs normal pressure. Think about when you have a cold. You get a lot of pressure in your head and that gives you headaches. There is always a normal amount of pressure in your skull which is normal for your brain. Since the girls don't have skulls surrounding the entirety of their brain there isn't nearly as much pressure. When the girls get colds their heads actually grow. Because there is no skull you can actually see the pressure since skin stretches. It doesn't grow much but enough that I am able to notice it." Doctors are hoping that with this reconstructive surgery that the girls will have a "developmental bump" (in a good way). The prospect of that is very exciting for the family since developmentally the girls are not much more than 1.
As of April 12, 2021, the girls have had one surgery. Though it seems to have gone well, both girls had a bad reaction to the anesthesia but are currently healing and recouping. The surgery the girls just had was to place skin expanders between the skull and skin that will eventually get expanded. (The girls had some placed before they were separated to be able to close their heads) we are expanding to get rid of some of the bald spots and fix some scars, their hairlines, and help make their eyebrows more even. This will also make sure there is enough skin to close when their skulls are fixed. The surgery they just had takes a few weeks to heal before expansion begins. Then it’s around 6 weeks of expansion and then reconstructive surgery to fix their skulls and the little cosmetic things. Hopefully, by August they will be headed home
If you are able and want to help the Delaney family, please visit their wish list registry ar send money via Venmo. You can follow their story on Facebook. Donate to their GoFundMe here.
