About
CDH stands for Congenital Diaphragmatic Hernia. CDH occurs when the diaphragm does not form correctly during gestation, leaving a gap between the abdomen and chest. Through this gap, the organs from the abdomen can migrate into the chest, shifting the heart to one side and leaving less space for the lungs to develop and grow. Surprisingly, its occurrence rate is similar to that of spina bifida and cystic fibrosis, yet hardly anyone seems to know about it.
CDH is typically repaired within days to a few weeks after a baby is born, depending upon a number of factors. However, this is only the start of recovery for children with CDH as they then have to overcome respiratory issues related to having hypoplasia, or small lungs, and possibly pulmonary hypertension as well as feeding challenges. Babies with CDH often have NICU stays of a minimum of two to three months, but can be as lengthy as over a year too. Every case is unique.
Some babies with CDH will require ECMO, or a heart-lung bypass machine, within the first month of their lives. This life-saving machine gives these children some time to “rest” and build up strength to do the work of the heart and lungs themselves once hopefully coming off of ECMO.
The most important thing when being given this diagnosis is finding a facility that is well-versed in treating CDH. Nationally, the chances of survival are 1 in 2. At a place that knows what they’re doing, the odds go up to 80% or more, depending on the severity of the case. Again, each case is different, and there is no clear trajectory as to how to treat every case, which is why it’s so important to find a place that has a full arsenal of medical “tricks” to try no matter what comes up.
For more detailed information about CDH, please visit CHOP’s CDH page here.
Our Heros
Molly’s story starts long before she was even born. Our plans for a second child were put on hold by the coronavirus pandemic in early 2020 and a very early miscarriage later that year. When we saw the “pregnant” result on the test in November 2020, it had been a bit of time coming. Needless to say, Molly was very much wanted and loved for a long time before she even was here and will continue to be loved despite her not physically being here.
Meet Molly
Evan’s story starts at his 20 week anatomy scan. On December 28, 2020, I went for my 20 week anatomy scan during COVID - alone. After what felt like forever, the ultrasound technician said she had to get the doctor and not to get dressed. The doctor came in, re-scanned and told me to get dressed. Walking to his office, he told me to call my husband so he could talk to both of us. I knew something was terribly wrong but the words Congenital Diaphragmatic Hernia had never crossed my mind. Those three words would forever change our lives.
Meet Evan
On the day after Valentine's Day, we got Tilly’s CDH diagnosis. We had been living in Southern Africa for the past 4 years and got her diagnosis in Pretoria, South Africa. It’s actually funny, we kind of got her diagnosis by accident. I had already had my 20 week anatomy scan which missed the CDH and decided, kind of on a mama instinct, to go to a specialized fetal assessment center to get an additional scan. This scan is where they found Tilly’s CDH.
Meet Tilly
Why the Octopus
Shortly after Molly’s CDH repair surgery, she had a number of extra tubes to help with drainage, one of which was a “sump” that went in her mouth and down into her abdomen. It didn’t take long for her to start grabbing onto this, and for anyone near her to try and latch her little fingers onto something else so she would not pull out the sump. In sharing updates with our family and friends, Finn’s caregiver asked if she could have a NICU octopus. We had never heard of this and asked for more details. Over the last decade, crocheted octopi have popped up in NICUs around the world, and shown to have a positive effect on these sick babies. The idea is that the tentacles simulate the umbilical cord in their mother’s womb and lessens the desire to pull on all the tubes and monitors. They also have been shown to have a calming effect by having a “buddy” in their bed with them.
Molly was fortunate to have not just one, not two, but three octopi that we cycled through as we had to make sure to wash them regularly to prevent any infection. As we all know, Molly was very sick, but her nurses always made sure she had her octopus to bring her a bit of comfort. For this reason, the octopus symbolizes so much for us in our time with her, reminding her of mom and dad when we couldn’t be there as well as how much everyone at CHOP came to know her, care for her and fight for her too. There really was no other choice when deciding on the imagery to go along with this run.
For more information about how the Octo Project got started, click here. A fair warning though, this project started in Denmark, and as such this page was originally written in Danish so parts of it may not translate as well!
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It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world.
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It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world.
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It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world.