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Griffin's Fearless Fight
Started by: Alicejane DePhillippo
Griffin's Fearless Fight
Sarah and Trevor were overwhelmed with joy when they found out they were pregnant with a beautiful baby boy, who they decided to name Griffin. The first trimester went smoothly and Griffin’s development seemed to be right on track. However, life came to a screeching halt at their 20-week check-up appointment.
During that appointment the Doctor informed them that they had found an abnormality on the ultrasound called Congenital Diaphragmatic Hernia (CDH). Congenital Diaphragmatic Hernia (CDH) occurs when the diaphragm muscle – the muscle that separates the chest from the abdomen – fails to close during prenatal development, and the contents from the abdomen (stomach, intestines and/or liver) migrate into the chest through this hole.
When the abdominal organs are in the chest, there is limited room for the lungs to grow. This prevents the lungs from developing normally, resulting in pulmonary hypoplasia (or underdeveloped lungs). This can cause reduced blood flow to the lungs and pulmonary hypertension (high blood pressure in the pulmonary circulation), as well as asthma, gastrointestinal reflux, feeding disorders and developmental delays. CDH can occur on the left side, right side or, very rarely, on both sides.
Without experienced and professional care, it is impossible for a baby with CDH to survive. As you can imagine this has left both loving parents in absolute uncertainty day after day. Fortunately, Sarah and Trevor have found a place called, Children’s Hospital of Philadelphia (CHOP), that specializes in CDH and are currently in their care. Being in the care of CHOP required Sarah and Trevor to move to Philadelphia a month prior to Griffin’s birth and stay there for another four months after his birth on March 29th 2019.
During those months Griffin had surgery on April 11th, he had a Diaphragmatic Hernia Repair with a mesh patch and a ladds procedure. The defect was larger than expected and that is why they had to use the mesh patch. Griffin was in the NICU for 122 days. Currently his medical issues are reflux, pulmonary hypoplasia requiring oxygen, feeding intolerance requiring an NG tube, and working to meet developmental milestones.
This condition is not only life – threatening and undetermined, but it is also expensive and requires long term medical care. Griffin’s medical diagnosis also does not allow him to be sent daycare. What would be a small bug for you or I could land him back into the hospital. Your contribution will go a long way helping baby Griffin, Sarah and Trevor.
Please take the time to review the link to Congenital Diaphragmatic Hernia and make a donation to our campaign for Griffin’s Fearless Fight. Your contribution will help with costs that Sarah and Trevor will encounter during this difficult and uncertain time.
Thank you <3
CONGENITAL DIAPHRAGMATIC HERNIA (CDH):
https://www.chop.edu/conditions-diseases/congenital-diaphragmatic-hernia-cdh
Latest Update
right before Thanksgiving. Our family cannot thank you enough for your kind and generous spirit. Please feel free to reach out on facebook or to get my phone number from Alice if anyone is interested in more info or updates! Griffin and I are also happy to have visitors with flu shots who are sickness free! <3
Posted by Alicejane
January 15 at 11:04pm
Happy belated New Year friends! We have been so excited to start this new decade as a family of 3! Apologies for the gap since our last Griffin update, as I'm sure you can imagine, a lot has changed! He has finally been weaned down to oxygen only at night which will continue through the winter and hopefully be discontinued come spring. They are hoping that this will give his lungs a bit of extra support and also help with his weight gain. He is LOVING food and continuing to take all of his nutrition by mouth, but weight gain is still a struggle as it is for many CDH kiddos. Nothing can slow this little guy down and he started crawling right at Thanksgiving and cruising not long after. We are so excited to see how he changes each and every day and can't thank all of you enough for your continued support through your messages, prayers, financial contributions, and good vibes. An extra special thank you goes out to the anonymous individual who made an overwhelmingly generous contribution
Posted by Alicejane
January 15 at 11:02pm
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Sarah Koenig — 4 years ago
Griffin is getting so big, hurray for Griffin 🎉 I praise God for each and every progression
Posted by Alicejane
January 15 at 10:47pm
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Posted by Alicejane
January 15 at 10:46pm
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Posted by Alicejane
January 15 at 10:46pm
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favorite. The team at CHOP continues to be concerned about his weight gain and have increased his fat supplement called micro lipids, so the additional nutrients from oral feeds is very exciting! Also this month, Griffin has learned that tummy time is not as terrible as he originally thought and has started practicing on his own and has even started sitting up unassisted. While these may sound like standard milestones, they are huge for Griffin after his four month NICU stay and extensive abdominal surgery. We are very proud! His huge 6 month appointment is coming up on October 15th which will tell us a lot about his progress and the plan for his care moving forward! Thank you all again for your love, kindness, and support!
Posted by Alicejane
October 1 at 12:40am
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Alice DePhillippo — 4 years ago
So happy to hear that he is doing well 💕
Hi friends! Sarah here, just wanted to pop on to give a little update about Griffins progress. It's been a big month for our little man! Several providers including his speech therapist observed a tongue and lip tie and suggested that corrective intervention could help with his feeding issues. Tongue and lip ties can affect ability to eat and lead to poor weight gain and digestive problems, all of which are things that Griffin already experiences issues with due to his CDH. We met with a plastic surgeon at CHOP on September 9th and were fortunate that they were able to do a corrective procedure called a frenulectomy in the office with a small amount of anesthetic. Our tough little guy was more bothered by being swaddled than by the actual procedure. Since then he has started latching on a bottle and is making forward progress with our incredible speech therapist, has been experiencing reduced reflux, and has started trying some foods. So far sweet potatoes, bananas and avocados are his
Posted by Alicejane
October 1 at 12:36am
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Posted by Alicejane
August 31 at 1:47pm
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Posted by Alicejane
August 31 at 1:47pm
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10 Supporters
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- Alice & Family3 years ago Happy Belated Birthday Griffin!!
- Anonymous4 years ago
- Anonymous4 years ago
- Marjorie lois Newman4 years ago Best wishes.
- Anonymous4 years ago
- Anonymous4 years ago
- Kristen Smith4 years ago Sarah, My thoughts and prayers are with you and your family, Griffin is beautiful, you can do this ♥️
- Albert Decker4 years ago
- Sarahann Koenig4 years ago Along with prayers I wanted to personally help. Best wishes.
- DePhillippo & Garman Family4 years ago We love you guys ❤️
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