Mikaela Frances Jane

A website for our family and friends to keep up with Mikaela and her Arthrogryposis.
Also to help families find their way through this journey.

 
 

"Strength does not come from physical capacity. It comes from an indomitable will." - Gandhi

 
 
 
 

The Delivery of Mikaela


Friday, February 27, 2009


Mikaela Frances Jane Ainuddin was born on Saturday, December 27th, 2008 at 2:46pm. She weighed 6 lbs. and 2 oz. and was 19 1/2 inches tall. She was born at Queen of the Valley Hospital which is part of the Citrus Valley Medical Group, and her doctor was Dr. Victor Morales, of Magan Medical Group. During pregnancy, she was considered a high risk baby, considering certain symptoms and suggested diagnosis. These were based on the 4-D ultrasound we had done when Melanie was 29 weeks pregnant. Her arms seemed rather stiff and she didn't bend them at all, and her hands looked like they were severely tucked under her forearms. Based on an ultrasound, we were referred to Dr. Greggory Devore, who is an expert at fetal ultrasounds. One diagnosis suggested Trisomy 18, another being Arthrogryposis, and another being Down Syndrome. Despite these many diagnosis, by many doctors, Melanie and I remained quite confident and sure that we had ourselves a healthy and beautiful baby girl that may need a little extra help growing up. Meanwhile, to make things even less smooth, Melanie developed a DVT (Deep Vein Thrombosis, or blood clot) while she was on bed rest. Basically, the lack of activity and movement reduced her blood circulation and she developed the DVT. As a result, she was hospitalized and given blood thinners to control the clot. The DVT made matters more difficult especially if she were to have a C-Section, which is a major surgery. It was clear that a vaginal birth was the safest route for Melanie since it would avoid the surgery and reduce the risk of major blood loss and a possible blood transfusion.

Things seemed to go according to plans. Melanie was induced and she went into labor. It became apparent that every time Melanie had a contraction, Mikaela's heart rate dropped greatly. Dr. Morales was troubled by it and assumed something may be wrong. Ultimately, a decision had to be made regarding how to conclude the delivery. Continuing with a vaginal delivery seemed to put Mikaela through more danger and it seemed that she may not make it. The alternate choice was to have an emergency C-Section, which would be the safest route for Mikaela, but be very dangerous for Melanie since she had the blood clot. In the end, the decision was made by Melanie to go ahead with the C-Section despite our doctor's recommendations. We were instructed that because of the situation, Melanie would have to be transported to the Intensive Care Unit after the C-Section to be monitored for her blood clot. Also, because of the medications she has been on, she would have to be under general anesthesia, which would put her completely to sleep. We knew Melanie would not be able to see Mikaela right away because of this.

At 2:00pm, Melanie was taken to the operating room. She was accompanied by Dr. Morales, who would be doing the surgery. Also with him was Dr. Wanda Brady, of Magan Medical Group who was there for support, Dr. Fermin, a neonatal specialist from the Neonatal Intensive Care Unit, the Charge Nurse from NICU, the anesthesiologist, and Dr. Yang, another Neonatal specialist. I had to wait out in the hallway, but I was accompanied by our Doula, Lorie David, whom we hired for the labor. Despite many setbacks during the procedure, including the power going out twice, the surgery was a success, and Mikaela was born at 2:46pm. Melanie was immediately taken to a recovery room after.

When I saw Mikaela for the first time, it was pretty much exactly what everyone has said it would be when you meet your first child. One thing for sure that I realize looking back at what I experienced, is that any form of doubt and uncertainty of my ability to be a father went right out the window. I remember seeing Mikaela and how vulnerable she was, how all these strangers were touching her and holding her and poking her. My first instinct was to reach out and punch every single person in the room and snatch my daughter to protect her from them. She was crying and she didn't know where Mommy was. The nurses notified me that Melanie's decision to go ahead with a C-Section was the right decision. It turned out that Mikaela's umbilical cord was wrapped around her neck three times. Which explained the sudden drop in heart rate every time Melanie pushed. It's sometimes common for an umbilical cord to be tangled or wrapped around a certain part of the body, but three times seemed unbelievable. It made plenty of sense when I remembered that the doctors made a note that Melanie had an above average amount of amniotic fluid, which allowed Mikaela to move freely and "bounce" all over, increasing the chance of cord entanglement. Quickly enough, I noticed her arms and hands and I snapped back to reality and had to let the nurses and doctors do their job. It was clear as day that Mikaela was going to be a little different than the normal child. All that remained was my dedication in protecting this little baby and doing everything in my power to give her the help she needed. It took a few minutes, but eventually I came to terms with letting these nurses look after her, and I felt that she was safe, and my focus then shifted to Melanie.

I was taken to where Melanie was, and surprisingly, she just happened to wake up as I approached her. I immediately told her she delivered a beautiful baby girl, and to not worry that she is being taken care of. Melanie asked me questions about her, particularly about her hands, and all I could say to her was "She's going to be fine." I pulled out my cell phone and showed her some of the pictures and video I took, and Melanie seemed much more at ease. As much as I wanted to stay there, I couldn't ignore Melanie's wishes, which was to leave her be and stay with Mikaela. I gave her a kiss and I left her to get her mom so that she could be with her. I went back up to the NICU and stayed with Mikaela. Dr. Fermin approached me and said "Well, she isn't an 18, so that's good news." 18 being short term for Trisomy 18. He couldn't say anything else about her since he wasn't sure, but he told me that they will find out through the help of other doctors. The fact of the matter was, this was going to be a long process, one that no parent really prepares themselves for. All I could hope for was the doctors and nurses would do the best job they could to help my little girl. This NICU would be our new home for the next 20 days.

A day later, Melanie was released from the Intensive Care Unit and brought back to the Maternity Ward where she was given a postpartum room. That night, Melanie got the strength to get up and get in a wheelchair. It's been two days for her since she went to sleep with a big belly, and woke up an hour later with no belly at all. This was a significant moment for us since it would be the first time Melanie and Mikaela would meet. The moment came when Melanie was wheeled into the NICU, and I remember her asking "Which baby is mine?". She was guided by one incubator after another, and I remember seeing her head turning side to side as she passed them, checking to see which one was hers. She was wheeled up, the last incubator, and finally Mikaela got to meet her Mommy. It's quite a trip for me to think back at it. I mean there was my daughter, in a box, with a jaundice light over her, and tubes going in and out of her. And then there was my wife wheeling up to her, with tubes going in and out of her. To see Melanie's hand reach inside the incubator, and touch the hand of Mikaela was something I will never forget.

The next day, was New Years Eve. I remember this day because two great things happened. One, Melanie was cleared to go home, and Two, we got some great news from a doctor. I visited Mikaela that day, and her nurse told me that Dr. Hanes, an orthopedic specialist came to visit her. He took x-rays and studied her arms and based on his assessment, Mikaela's prognosis was good. All she would need was rigorous Physical and Occupational Therapy. He said her bones looked great, but she needed to stretch out her tendons which had tightened severely in utero. While there were still plenty of questions to be asked, the news that she was going to be okay was the best news I've heard in my life. I remember Melanie breaking down in tears of relief when I told her the news. That day, I took Melanie home to get cleaned up and dressed, so we could go back to the hospital in time to say Happy New Year to Mikaela.

On Thursday, January 15th, Mikaela was approved to be discharged from the hospital. The past 20 days were filled with so much joy, and so much stress and fear. We still didn't know exactly what had caused Mikaela's condition. Specialist, after specialist came and went, did their tests to try and find something. Geneticists came and went, Neurologists came and went and still nothing. We still weren't exactly sure what Mikaela's condition was. Everything from Hyper-tonal muscles, Arthrogryposis, and Holt Oram were still possibilities. Once we were home, the next several weeks consisted of doctor follow ups, and 2nd and 3rd opinions. We finally got our answer on Tuesday, February 24th. That day, we went to Children's Hospital of Los Angeles and met with Dr. Lightdale, who specializes only with children's orthopedics. Dr. Lightdale confirmed to us that what Mikaela has is indeed Arthrogryposis, which is a rare congenital disorder, usually involving contractures, muscle weakness, and fibrosis in the joints. The good news is that Arthrogryposis (or AMC, Arthrogryposis Multiplex Congenita) will never get worse over time. The way to treat it is intense physical and occupational therapy to help loosen and stretch the joints and muscles, with surgery as a possible option down the road. Despite what she has, the most important thing for us as parents is to understand that her life is limitless. Mikaela will be able to do anything and everything that any regular person can, but just do it a little differently.

In the end, it's been quite a roller coaster to get here, and through it all, Melanie and I have been blessed with this amazing little baby. Despite what we have been through we are so thankful for everyone involved, even those doctors. I've heard several times from family and friends that we should seek legal action against some of those doctors for putting my wife through a lot of things she didn't have to go through. My quick response is "If it bothers you so much, you are more than welcome to sue them." I guess our point is that we hold no anger, or regret for anything that has happened. We're moving forward like any other parent would when put in any similar situation. We've done a lot of research on the possible situations we could have been faced with based on some of these doctors opinions. Let's just say I'm glad doctors can be wrong too. Mikaela is now receiving PT and OT from San Gabriel Valley Regional Center, by someone who comes to our apartment. She also has several splints that have been made for her arms to help with stretching. Aside from those two things, we can't wait to watch her grow up into a beautiful, young lady.