Mikayla Love’s Journey of Craniosynostosis

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Michael & Mikayla 04 03 08 002Mikayla Love was born on April 1, 2008. Mikayla was born at 36 weeks.  A Healthy, Beautiful little girl.

A twin to her brother Michael Christopher. One of the happiest days of my life. I say that because I have four children and the other happiest days were when they were born too. George is 16 and Meagan is 11.

MIKAYLA1110 psuedo picI have always felt  that something was wrong. Mikayla’sright eye turns in and her nose is slanted. We brought it to the pediatricians attention. We were told she was a twin and would outgrow it. I just wasn’t satisfied with that answer. We asked again  and were told she had Pseudoesotropia by the pediatrican. It still wasn’t satisfying me. It didn’t seem to get better and she is now almost a year old. I still went with my gut and it told me to keep going until you are satisfied with the results your getting.  

 I took Mikayla to my ENT Dr. Chu and asked the Dr. “What do you think”?  He said yes, her nose is crooked but get her eyes checked first. So we took her to Dr. Turtell a Pediatric Eye doctor on March 3th. Where he then told us her eyes were fine he felt it was all cranio. He referred us to CHOP Hospital to meet with the Cranio Facial Team.

More time has passed. She is now 12 months. She still looks the same. Smart as a whip. When she was first born I felt she was behind but then I thought I was just comparing her to her brother. She eventually caught up and sometimes she is even ahead of him with things.

First stay at the Ronald McDonald House - Philadelphia

First stay at the Ronald McDonald House - Philadelphia

We first met with Dr. Bartlett  on April 21 and he suggested a CAT scan . It was nearly 2 months before we got one since he said he didn’t think it was such case but let’s be sure, so we didn’t rush the CAT scan, being in denial I guess we waited. We never would have imagined it would be such a case.

We were scheduled for our first CAT scan on June 10th. Mikaylahad a cold. We were told they couldn’t put her under so we had to reschedule.We still met with Dr. Barlett and informed him of a bump we felt on Mikayla’s right side of the top of her head. At that point he seemed to lean more towards Craniosynotosis. For the next two weeks of waiting for her next CAT scan it was almost a nightmare. I looked on the internet and drove myself nuts. I researched every case of craniosynotosis. I felt in my stomach I knew the answer before even having the test done. My husband, family and friends were saying it’s not going to be, to stop being negative. As a mother you know your child and when something is wrong you know it!

Waiting for CAT Scan

Waiting for CAT Scan

Mikayla waiting on CAT SCAN 

On June 24th  we had her CAT scan but now had to wait a few days for the results. She was put to sleep which was another experience in itself. I was thinking to myself, “How am I going to go through surgery if I can’t even handle them putting an IV in her”.  Her Daddy stayed with her during her IV and also when they took her in for her CAT scan. I stayed behind with Michael Jr. and we paced the hallways waiting.

In recovery after CAT Scan

In recovery after CAT Scan

Mikayla is now just days away from 15 months old.

It was on June 26, 2009 at 12:52  my world crumbled.
When my husband told me the news. He had just hung up withthe doctor, my mind was racing with questions. Who? What? When and How? The resident Alex read the report and told us it was confirmed that Mikayla has Craniosynostosis. Two of her sutures were closed. It was the Right Coronal and a smaller one off the Coronal called The Temporal Squamosal . We had to wait until Tues the 30th to meet with Dr. Bartlett.  I have to admit that my selfish attitude at the time asked, “Why did this have to happen to me?” But it is my Daughter it is happening to. She is defenseless, innocent and has so much to live for. She is the one who has this condition. I know nothing about it. How do I help her?  “Someone please help me” is all I thought and cried about for two days straight. I felt as if someone kicked me right in the stomach.

The few days we had to wait went by so slow but it was until we walked into Dr. Bartlett’s office I felt as if we weren’t alone. My husband had told me of a child in the other waiting room who had the surgery and it also appeared that a few others there also had craniosynostosis. We met with bothDr. Lee and Dr. Bartlett and he explained the whole surgery. Michael brought a recorder to record everything he had said since we had the twins with us and they are hard to handle as it is, never-mind trying to talk to a Cranio surgeon and a Neurosurgeon at the same time.

We brought our list of questions and they were all answered.  Before we knew it we were sent upstairs to meet with Dr. Leslie Sutton, the Neurosurgeon. I never in my life thought I’d be hearing those words – “Neurosurgeon” . Especially when it comes to my kids. He briefed us on what his part in her 5 hr surgery will be. He told us his part is all but 20 minutes. 

 Most of our questions were mostly answered by the Plastic Surgeon. Our main concerns were Death and Brain Damage. He assured us the risks were very slim. It’s amazing as we were holding the doctor up. He talked to Michael about going right into surgery to remove brain tumors like it was nothing. I understand we are 1 in the many cases he has. But this is our princess we’re talking about. She is our miracle and we are about to hand her over to him. Her life is in his hands.

At this point we are awaiting to speak to Amanda,  Dr. Bartlett’s Surgery coordinator to schedule her surgery. We are expecting to hear something on  July 6 as to where we go from here.

Please click on the post links to get the most recent update.


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