Our twin girls, Harper and Hailey, were born on October 13, 2016. We are truly blessed having two healthy and beautiful little girls in our lives. During the early stages of the pregnancy, our doctors told us there may be some complications with twin to twin transfusion.
Twin to twin transfusion syndrome (TTTS) is a serious disorder that occurs in identical twins and higher order multiples who share a placenta. This occurs when the blood vessels of the babies’ shared placenta are connected.
This results in one baby (this twin is referred to as the recipient) receiving more blood flow, while the other baby (this twin is referred to as the donor) receives too little. Twin to twin transfusion syndrome is also referred to as chronic inter-twin transfusion syndrome. There aren’t many treatments for TTTS but the most common procedure to treat TTTS is reduction amniocentesis. This procedure involves draining the amniotic fluid from around the recipient twin. This procedure may improve circulation in the donor twin especially if the anastomosis are superficial in the placenta and the TTTS is a lower stage. Due to this, we had to go for ultrasounds every two weeks to monitor the girls. Luckily, towards the end of the pregnancy the doctors had ruled out TTTS which was great news and such a relief.
On October 13, 2016 our life became complete with the birth of two little beauties. After our first few weeks at home, we noticed that they each favored one side of their neck, always tilting their head to one side. During one of our early pediatric visits, our doctor recommended Physical Therapy to help with the torticollis. Through Delaware County (PA) Early Intervention, we were granted state funded physical therapy. We spend a few minutes at a time, multiple times a day, exercising the girls necks and every Monday morning both of them go through an hour of intense physical therapy that helps strengthen their necks. In just a few months we have seen incredible improvements; the girls have close to 100% range of motion - compared to the 55%-60% range of motion they had when they started PT.
However, during one of our early PT sessions our physical therapist mentioned that he was seeing signs of plagiocephaly. Like many parents, we didn't know what plagiocephaly was. Google searches and social media posts only made us more nervous but we found out through friends who dealt with the same diagnosis that it was't as bad as we originally thought.
Shortly after his assessment, we spoke with our pediatricians and they recommended seeing a specialist to do a scan to see if they meet the requirements for use of a helmet. The specialist was quick to diagnose both Harper and Hailey with plagiocephaly.
On April 7, 2017 the girls received their Cranial Orthotic Devices to help correct the soft and flat spots on their heads. Our girls are perfect in every way but knowing that they will have to wear helmets 23 hours a day for 4 to 6 months hasn't been easy. But in the end, we know that these helmets will help mold their heads and correct any imperfections they may have.
We also quickly learned how expensive Cranial Orthotics can be and found out that our insurance plan did not cover the cost of the helmets. The stress of being new parents to twins was tough enough. but then finding out about the plagiocephaly diagnosis made some days absolutely overwhelming. Luckily we were able to obtain medical assistance which helped subsidize the cost of the helmets. On top of that, we are truly blessed to have family and friends who have been able to provide continuous support. Their help and dedication is an inspiration to move forward with Helmets 4 Hope.
As we continue to learn more about plagiocephaly and how many families are impacted by this diagnosis, we are learning that many families just cannot afford treatment. The main focus of families impacted by the plagiocephaly diagnosis should be the children and not the financial burden. Our goal is to raise money to pay for treatment for those families. Even if we can help one family, we know that we will be able to relieve just a little bit of stress.
We'd also like for Harper and Hailey to be advocates for plagiocephaly. Our girls will never remember that they had to wear helmets but that shouldn't stop from people learning about plagiocephaly and why kids have to wear helmets. Unfortunately, there is a stigma that comes with wearing helmets and through Helmets 4 Hope we'd like to educate others as to why it is necessary. We hope you follow our journey and can help assist others going through the same thing as so many other families.
The Gana Family