Once Upon a Photograph

When Hannah was born the Dr. told us they needed to keep a close eye on Hannah's head and the shape. They hoped, things would change in a month from when she was born. When we took Hannah for her 1 month check-up, we were faced with the devastating news about Hannah and Craniosynostosis. Below my story are the facts and information on Craniosynostosis. We would later find out, that we only had a few weeks to seek the proper surgeon and facility or she would fall behind on normal development. Meaning possibility retardation or mental delays. So as urgent as we took it, we did our part in finding the best surgeon and facility.

We were first led to a Dr. in Lake Worth, that "smiled" and was brought to joy, by the thought of opening my little girls head. Sick I know, but we thought, since recommended by my pediatrician, she would be in excellent hands. However, he would not perform the surgery at St Mary's for which we wanted since they have a children's ward, he wasn't "contracted" to them and as I quote, "He was against that hospital due to issues with the hospital and Jack Nicholson". So after this Dr and his comments and seeing Palms West (unchild facility) we agreed there is no way we could trust them to bring my daughter back to me.

So we didn't know what to do. So after talking to a very great friend, she informed me of Arnold Palmer's Children and Women's Hospital in Orlando. She had her own experience with them and couldn't say enough about them. So it was a Friday, we walked out of Palms West Hospital, after being told my mom could not be in the admittance office with me while they explained everything to me, we literally walked out. It was 2pm and time was of the essence, now meanwhile, I donated several pints of blood for little Hannah, knowing she would need a blood transfusion, that were being sent the following week to Palms West in preparation for her surgery that week. I was in a bind, now I walked out of the hospital fearing they would kill my daughter and now I have blood going there, a place that was not performing the surgery. I didn't have a Dr in Orlando, we were frustrated and upset, not knowing what we were going to do. I made the one and only call needed. Dr. Eric Trumble. A name that still brings me to tears. As I said it was Friday, now about 4pm, by the time I got a hold of there office. By the time I got off the phone, not even knowing Hannah, he had made arrangements for me and my family to stay at the Ronald McDonald's house and reserved the OR for her, that following Monday. As I said time was of the essence.

We left Sunday afternoon to get situated before the dreadful day we were all dreading. Monday came way too fast, we checked her in to the hospital, where they were amazingly perfect and kind. I mean you want to talk support, WOW!!! We waited to be called into the Triage area where they would take her before the Anesthesia, they took all our information, including her blood type. Yes, you see, the moron from Lake Worth claimed I was a match to her considering I was not diagnosed with RH Factor during my pregnancy, so I would most likely be an identical match. Well guess what, after receiving mine, her own mothers blood, we were not a match, her father was, and by that time, it was too later to accept his blood. So we wasted a lot of blood meant to go to our little girl. Come to find out, Noah has her blood type, we tried asking the Dr (in Lake Worth) if Noah should give blood, and we were told, usually only the mothers are matches, yeah right!!

So they received the blood needed and it was about that time. I was not able to go with her while doing the Anesthesia so we would wait anxiously in a tiny waiting area, for many hours, hearing one family that there little girl, newborn, may not make it. It was all sur-real. Was this really happen to us? Could this be us? Shortly after many tears, the Doctor came out, and for what was the longest walk of my life, he sat me down and told me she did wonderful. THANK GOD!!! Hannah had an angel that day.

The moment we got to see her for the first time, was one of the hardest moments of my life. She was on morphine and groggy. We thought things would only go up from there, but as we were warned from Dr. Trumble, it would get worst until the swelling in her skull went down.

The follow three days were excruciating for us. She would swell up so bad, her eyes were swollen shut, her nose was so swollen she would snore, her lips so swollen you would wonder if she was getting enough oxygen. And she needed another Blood Transfusion. She needed blood taken almost every hour. It was so painful to see this 2 month old baby suffer like this.

Hannah would go on to a unbelievable recovery. She bounced back in 5 days, never to look back again. Hannah will know about her disorder once shes older, only because her children have a large chance of developing the same disorder as she had.

It is my duty to spread awareness, if ever you have doubt in the shape of your newborns head, consult with your physician. Remember time is of the essences!!

Here is a link to a charity ran by Jorge Posada in honor of Craniosynostosis. To spread awareness, you can purchase a Wishbone bracelet to help parents cope and help families with expenses when needing treatment, as I did. https://auction01.charitybuzz.com/secure/viewKioskItem.do?catalog_item_id=743099&style=print

Im forever thankful for:

Arnold Palmers Childrens Hospital

Dr. Eric Trumble

Jorge Posada Foundation

Ronald McDonald House of Orlando, FL.

Also, CAPPS

and all the love and support we got from friends and family.

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What is Craniosynostosis?

Craniosynostosis is a birth defect of the brain characterized by the premature closure of one or more of the fibrous joints between the bones of the skull (called the cranial sutures) before brain growth is complete. Closure of a single suture is most common. In contrast to normal skull growth, in which the skull expands uniformly to accommodate the growth of the brain, premature closure of a single suture restricts the growth in that part of the skull and promotes growth in other parts of the skull where sutures remain open. This results in an abnormal shape of the skull, but does not prevent the brain from expanding to a normal volume. However, when many sutures close prematurely, the skull cannot expand to accommodate the growing brain, which leads to increased pressure within the skull and impaired development of the brain. Craniosynostosis can be gene-linked, or caused by metabolic diseases, such as rickets or an overactive thyroid. Some cases are associated with other disorders such as microcephaly (abnormally small head) and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). The first sign of craniosynostosis is an abnormally shaped skull. Other features can include signs of increased intracranial pressure, developmental delays, or mental retardation, which are caused by constriction of the growing brain. Seizures and blindness may also occur.

Is there any treatment?

Treatment for craniosynostosis generally consists of surgery to improve the symmetry and appearance of the head and to relieve pressure on the brain and the cranial nerves. For some children with less severe problems, cranial molds can reshape the skull to accommodate brain growth and improve the appearance of the head.

What is the prognosis?

The prognosis for craniosynostosis varies depending on whether single or multiple cranial sutures are involved or other abnormalities are present. The prognosis is better for those with single suture involvement and no associated abnormalities.

What research is being done?

The NINDS conducts and supports a wide range of studies that explore the complex mechanisms of early neurological development. The knowledge gained from these fundamental studies provides the foundation for understanding how this process can go awry and offers hope for new ways to treat and prevent brain birth defects, including craniosynostosis.

NIH Patient Recruitment for Craniosynostosis Clinical Trials

At NIH Clinical Center

Throughout the U.S. and Worldwide

Organizations

March of Dimes Foundation

1275 Mamaroneck Avenue

White Plains, NY 10605

askus@marchofdimes.com

http://www.marchofdimes.com

Tel: 914-428-7100 888-MODIMES (663-4637)

Fax: 914-428-8203

Children's Craniofacial Association