Amelia – Cloverleaf

Before surgeryAmelia Anne was born on 11/09/12 and was diagnosed with Cloverleaf or also known as “kleeblattschadel” Craniosynotosis at birth. Multiple sutures on her skull were fused together and the more sutures that are fused, the worse the condition is. The Doctor noticed right away something was not right with her head shape. She was sent to the NICU and stayed for 5 days. She had to be monitored so they could run some tests to make sure there was nothing else wrong. She weighed a whopping 9 pounds 6 ounces and was healthy everywhere else. Her condition happens 1-50,000 births and may be genetic called Crouzon syndrome. We have not received the genetic testing results back yet but if it is Crouzon it would mean if Amelia were to have a child he or she would have a 50% chance of being affected. I was in complete shock and did not know what to think. It was very overwhelming and scary for me. It was a lot to take in especially since I am a first time mom. I had thought I was going to have a perfectly healthy baby since I had a normal healthy pregnancy. I just kept thinking wow, I can’t believe this really is happening. It was the worst news I have ever received. It took me a while to accept the fact that my baby had such a rare condition that nobody had hardly even heard of and that she would have to have MORE than ONE SURGERY to correct it. I was so jealous of other moms having babies and then having absolutely nothing wrong with them and then here I am stuck with so much worry and a lot to deal with. I just felt alone at first but then as time went on I kept thinking nobody has a “perfect baby” & realized that it will be OK and that I am lucky and blessed to have such a beautiful happy baby because somebody out there probably has it a lot worse. I can’t think negative anymore, only positive from now on and to be strong not only for myself but for Amelia.  She had her first surgery when she was 3 and a half months on 02/27/2013 at Mayo Clinic in Rochester, MN. They performed a suture release. Opening all her sutures up so her brain would have plenty of room to grow. The surgery was two hours. We got to the hospital early in the morning at 6:00 am but they did not actually take her to operating room until after 10:00 am. Surgery did not start until 12:30 pm and lasted until about 2:30 pm. Then we did not see her until about 4:00 pm. It was the longest day of my life! So many emotions I can’t even explain. Surgery went great! She had to have a blood transfusion which is normal. It was very hard to see her in so much pain but she did heal faster than I expected. And as time went on she bounced back to her happy normal self. We stayed at the hospital for about a whole week. When she smiled for the first time, it made me so happy and proud that she just went through a major surgery and still managed to have a HUGE smile on her face. She had to wear a helmet after her surgery to help shape and protect her head for a whole year. We were very fortunate enough to travel to Sioux Falls, SD which is only an hour away for her helmet fittings instead of driving 5 hours to Mayo every 2-3 weeks. My last visit to Mayo was on 09/17/13 and we received great surprising news that she does NOT need to wear her helmet anymore! The surgeons were very impressed on how great her head looks now, (7 months later) compared to before surgery. She still will have to have an additional surgery when she turns 1 which will be anywhere between November and  December of 2013. This will be reconstructive plastic surgery and will take at least 6 or 7 hours. It will shape her head to look more like a normal baby’s skull. I hope and pray it goes just as good if not better as the first! Nobody will ever know the emotional stress and pain or what it’s like until you have experienced it yourself!! I really enjoyed reading similar stories. It makes me feel not so alone!! Cranio Moms and Babies are the STRONGEST by FAR!! I also just want to thank everybody that has helped me and supported me throughout this whole process. It means’s a lot!
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