Mikayla Love’s Journey of Craniosynostosis
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Angels by Jessica Simpson
MIKAYLA’S STORY
Mikayla 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.
I 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.
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!
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.
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.
1. weezer1773 | July 7, 2009 at 3:40 pm
Absolutely! Not only for her sake but for yours. Having to wait that long with surgery hanging over your head is agonizing. We waited about six weeks. It was hard but we were told that is the average wait time. It seems as though Mykala’s case is more pressing because she is over a year old. Julia was under a year which means that the skull is still soft. Their situations are slightly different. Fight with them until you get what you want!
2. Mary Grow | July 7, 2009 at 10:46 pm
I had no idea Mike, I am so sorry. My prayers are with you and your family.
God Bless!
3. linda | July 8, 2009 at 7:41 am
my prayers are with u and your family …..i will be thinking of u everyday …
4. linda molnar | July 8, 2009 at 7:43 am
my prayers are with u and your family
5. mary bryson | July 9, 2009 at 9:07 am
my heart and prayers go out to u and ur little angel. i will pray for her every night n i will think of her during my days. i cant imagine the weight of your hearts right now. mikayla is a beautiful baby girl and i pray for u n ur family. god bless lil mikayla, may gods healing hands help her to heal and recover to become the beautiful girl she is ment to be. believe in the power of prayer. many hugs n kisses to you mikayla! you r forever in my prayers.
6. Merc | July 9, 2009 at 2:28 pm
Michael & Liz…My thoughts and prayers are with you and you little girl….May God Bless all of you !!!
7. Kandi Cirelli | July 9, 2009 at 6:42 pm
I too will join to offer prayers for your beautiful baby girl and your family. I truly believe the power of prayer. Stay strong and God bless.
8. Joanne Gilbert | July 9, 2009 at 7:15 pm
Hello Michael, You keep a lot inside you. My neighbors son has the same thing. I know prayers get answered. Every Monday night a meet with a group of people at Grace and Peace and we have people come from all parts of New Jersey, New York and Pa. We have seen God miraculously heal people. Several only had a matter of time before they would be gone and God healed them. Put your trust in Him, He loves Mikayla and wants her well. He most of all wants your heart Michael, He loves you too. Your heavenly Father put many gifts in you, I hope some day you discover them and use them to glorify Him. When you pray to God use the name of Jesus it is the name above all names, it is above every sickness and disease. There is power in the name of Jesus. Thank you for sharing Michael and Liz so that I can pray for your daughter. God’s Word is supernatural medicine.
Proverbs 4:22 For they are life unto those that find them, and health to all their flesh. God Bless I want to hear the good report.
9. mary nisi | July 9, 2009 at 7:40 pm
Hi Mike its Mary Dee”s mom my prayers are with you and your family
10. Grandma & Grandpa Harbord | July 9, 2009 at 7:54 pm
To our Precious little Granddaughter
Sweet Mikayla
You are our first & only granddaughter so that makes you so very special to us.
On the day you were born, I held you in my arms & you grabbed my finger & held it so tight and you had my heart, every time you kiss me good bye, you melt my heart. You are the smartest and most beautiful little girl in the whole world with a personality to match, you are our special little Princess
You are as tough as you are sweet, Mikayla, and you will get through this with flying colors
and because of your strength, you will help all of us get through this.
Your Guardian Angel will never leave your shoulder at any time, plus we have 8 prayer chains going with more to come. So before you know it, you will back to your normal sweet self.
We will do whatever you need us to do, but most importantly, never forget how much we love you.
Grandma & Grandpa Harbord
11. Michael Harbord | July 9, 2009 at 8:17 pm
Thank you all. Liz and I greatly appreciate all your kind words, thoughts, and prayers. It helps, we can’t thank you enough! xoxoxo
12. Kerri Mullahey | July 9, 2009 at 11:06 pm
Liz…
As a mom you just know. Good for you that you stuck with your gut and followed through. I cannot not imagine how you are dealing with this. My thoughts are with you and your family. I will be following your posts and wish you all the best. Lots of prayers will be sent your way
13. Mikayla Love | July 10, 2009 at 8:37 am
Thanks to each and everyone of you for your kind words,Love and support. It’s people like you who are making it easier for us to get through this difficult time. I read her comments daily and it touches my heart to know you all care so much.
We love you all..xoxo
Mike ,Liz , Joey,George,Meagan and Michael Jr.
14. Sara (John's mom) | July 10, 2009 at 11:14 am
Mike,
I can’t imagine what you are all going thru. All the posts that I have read so far have such positive words, that’s the key for seeing Mikayla come thru this is to have all this positive energy.
As everyone else has commented, I too will keep you,your family and little Mikayla in my thoughts and prayers.
God Bless all of you.
Sara
15. Sara (John's mom) | July 10, 2009 at 11:26 am
I just saw the video of Mikayla,she is a beautiful baby girl and she WILL grow up to be a beautiful woman!
I don’t know you all that well, but from what I can see you and Liz are caring,loving parents. I wish you and your family love and happiness.
Sara
16. Joy Kemp | July 10, 2009 at 4:24 pm
Mikayla Love will be in my thoughts and prayers until this is all behind her!
17. Susan Khalil-Crespo | July 10, 2009 at 11:54 pm
Liz you are an amazing mother! Mikayla is lucky to have you! I will keep her and your family in my prayers God Bless!!!
18. TEDRA SZOROSY | July 11, 2009 at 3:17 pm
I wish the family the best! She is a beautiful little girl and very strong. She has very loving and supportive parents and family behind her. She will be fine and will grow up to be a very strong, and beautiful woman. Your in my heart and in my prayers.
19. Doris Sassadeck | July 11, 2009 at 5:27 pm
You and Mike and your family will be in Ken’s and my prayers. May God Bless you and keep you strong during your struggles. It is not easy. We know we lost our daughter. Love will keep you strong.
20. J Candela | July 12, 2009 at 12:07 am
Michael, what a beautiful little girl you have been blessed with. Keep your faith in the Lord, your daughter is in all of our prayers.
21. Denise O'Keefe | July 12, 2009 at 7:47 pm
Liz, My prayers and thoughts are with Mikayla. She will get through this and so shall you and Michael with the support of your family and friends. Always remember that family and are important. God Bless you!
22. Michael Harbord | July 12, 2009 at 7:56 pm
Thank you all. Liz, myself, and the rest of my family appreciate all your kind words, thoughts, and prayers. We feel the love! Thank you, thank you, thank you! XOXOXOXOXOXOXOXO
23. russell stella | July 13, 2009 at 9:16 pm
Mike, My wife and I wish all of you the best. We have been through something similar and know what the waiting, the appointments, the run arounds, the beating around the bush, and the mental anguish this could cause a family. If you all stick together you will all make it through. ALL OF YOU! It gets very difficult to focus on your lives, but be strong and and focus not only on your daughter but yourselves also. Mike if you need to talk just email me and ill get back to you. Concerned friend, Russell Stella
24. Michael harbord | July 14, 2009 at 5:15 pm
Thanks Russ, I appreciate your support, encouragement, advice, and being there for us. You are a true friend, thank you.
25. Carol Ann | July 22, 2009 at 9:18 am
This website was passed on to me by a freind, Sara (John’s mom). Your beautiful daughter and family will certainly be in my prayers every day. Good bless you all.
26. Michael Harbord | July 22, 2009 at 10:23 pm
Thank you Carol Ann, Liz and I, as well as the rest of our family appreciate your kindness and prayers. Please feel free to join us at the BBQ/Benefit this Saturday. We would love to meet you and Mikayla would certainly appreciate the support. 🙂
27. Joy Kemp | July 31, 2009 at 9:59 am
so glad to hear it’s all going well! hang in there…
28. cybill | August 15, 2009 at 8:08 am
I cannot thank you both enough for your beautiful website and story. My three month old son Thomas was diagnosed with Sagital Synostosis and is scheduled for surgery at CHOP on August 24th. As you know, I am sick to my stomach and so upset with the journey that lies ahead for us and our little angel. It was inspiring to read about Mikayla’s surgery and quick recovery! Please email me if you are able…..I would love the opportunity to talk with you further about your experiences at CHOP and with Dr. Sutton (he will be performing Thomas’ surgery). Thanks again and God Bless!!
29. Robyn - Cranio Mom | August 20, 2009 at 1:58 pm
Liz, be strong, our Cranio babies are the most special gift from God, Hang in there it is hard and the road is very bumpy, but know with the love from everyone around you , your special angel will be blessed. Cammie has had 2 surgeries and is awesome, he mayt need another very soon, but keep positive – Our Cranio babies are very very special ,gifts that have been given to us for a reason, that only time will tell why, have a look at my website http://www.craniokids.co.za
Lots of Love Robyn and Cammie
30. Glenn Juszczak | September 17, 2009 at 8:46 pm
My prayers and well-wishes go out to your entire family. This is Glenn from Urner Barry Printing and I would say that Mikayla must have a little bit of Grandpa Al’s toughness and I can see she has a whole lot of his sweet side, too (but doesn’t hide it like Grandpa does!) My mother-in-law had brain surgery back in May and she is doing well through the marvels of modern medicine and I hope the same results continue for you. God Bless and be strong! She, and your whole family are beautiful!
31. Tony Brown | September 24, 2009 at 5:54 am
I don’t know If I said it already but …Hey good stuff…keep up the good work! 🙂 I read a lot of blogs on a daily basis and for the most part, people lack substance but, I just wanted to make a quick comment to say I’m glad I found your blog. Thanks,)
A definite great read..Tony Brown
32. Michael and Karen Dooling | October 20, 2009 at 9:25 pm
Liz –
I just read Mikayla’s story. It’s all too similar to Mae’s story. It’s unfortunate that pediatricians can’t readily diagnose cranio, and that it takes the persistence of the parents to get the proper diagnosis. Thank God there’s information on the internet that steered us both in the right direction. Good luck with Mikayla’s journey.
33. Betty | December 16, 2009 at 11:10 pm
I know what your going through.19 yrs ago I told my Baby’s Dr something was wrong with him. this went on for three long months, till he went in the hospital. there they discovered CRANIOSYNSTOSIS. He was almost 4 months when he had his surgery. was also told it wasn’t heretitary or genetic, yet 6 years later was back out in CHOP with my new daughter with the same thing. this is the first time I have heard of a group for these kids. So nice to know other people are out there to talk to. and if my children now 19 and 13, have children with the same issues I know there is a place for them to turn to. thank you for this.
Betty Brick, NJ
34. Dana Reilley | January 21, 2010 at 9:16 am
Mikayla Love Harbord . I love you with my whole heart and your lovely family . God bless Mikayla ♥☻ Love Dana ♥
35. JennA Knabner | January 21, 2010 at 9:18 am
Mikayla i lovvve yoouuu.. And youurr soo cuttee.. byee [: ♥
-Jenna Knabnerr.
36. Michelle Caron | September 29, 2010 at 9:54 am
Wow Liz..what you & your family had to go through. Life isn’t easy, that is for sure…god bless you & your family..you have a beautiful family!
37. Shorty | May 16, 2012 at 2:28 pm
i feel your all pain my baby cousin is goin through that on may 29th