Life Is Sweeter Every Day
My son Maceo McKay was born on March 13, 2009. After an ideal pregnancy, and a short labor, he was born with no breath in his body. He was limp, grey and silent with Apgar scores of 1, 2 and 3. (The Apgar is the first test given to quickly evaluate a newborn’s physical condition after delivery and to determine any immediate need for extra medical or emergency care. With 10 being the best score it was clear that Maceo was in trouble). The diagnosis given by the doctors was Hypoxic Ischemic Encephalopathy. I was told that at some point in the few days prior to delivery, an “insult” (injury) happened in utero depriving my baby of oxygen for an undeterminable amount of time. Evidently he recovered enough from this injury to be born, but the lack of oxygen left him with a brain injury.
Because of his respiratory failure, Maceo was intubated for 5 days. When he was extubated, his suck/swallow reflexes were gone so he was unable to nurse. He had no cough and no gag reflex resulting in an inability to protect his airway creating high risk for aspiration.
We were told that he would need a G-tube placed in his stomach through which he would be fed. As a further result of his inability to swallow, his secretions of mucus and saliva were continually coming out of his nose and mouth and he required frequent suctioning. His breathing was loud and rattling with the secretions pooling in the back of his throat and congesting his upper airway and chest. My husband Joe and I were shocked and horrified to learn that our beautiful little newborn baby boy was overwhelmed with problems that according to the doctors, would possibly never be solved.
The doctors told us that he was going to have developmental delays and was highly likely to have cerebral palsy. We were told to hope for the best and prepare for the worst, that the range of possibilities for his future were from normal to devastating, that there was no way to know which and that we would just have to wait and see. The looks on their faces and their unwillingness to elaborate told us which way they felt it was going to go. It was absolutely awful. My husband Joe and I felt terrified and helpless.
I’d sit in the pumping room with the other NICU moms getting breast milk for our babies who were all in warming beds or cribs in the next room. We all had this nightmare in common: instead of being at home in our rocking chairs happily breast feeding and bonding, our babies were hooked up to electrodes, sensors, IVs and/or breathing apparatuses. A feeling of dread would fill my stomach each time I sat down with the pump to pull the milk from my body. It was truly unbearable.
In speaking with the majority of the doctors and nurses, I was discouraged from being too hopeful or optimistic about Maceo’s chances for a well and happy life. After a couple of days of being in shock, I slowly moved into action and began to fight. It felt like moving through molasses but what was the alternative? To sit around and wait for time to tell as one doctor suggested? No.
An army of friends came to our aid at the NICU and began regular rotations of visits so that Maceo, Joe and I would always have some love and support and enough food to keep us all going. They brought in a couple of outside pediatricians to help us sort through the mystifying information we were given. My sister Anna-Liisa, a radiation oncologist calling from her home in Pennsylvania, got on the phone and talked with the neonatologist to try to get some answers.
I started researching “developmental delays” and “hypoxic ischemic encephalopathy” and “brain injury in infants” and everything I could think of that might point me in the direction of real help for Maceo. It was unbelievable to me that this little warrior of mine who was so clearly already fighting for his life was going to have a future of devastating disabilities
The aspect that is the most troubling to me was the lack of direction and help in how to deal with this from the medical community. I was told that Maceo was going to be disabled and aside from physical and occupational therapies, there was nothing else I could do for him. This conventional treatment alone did not feel like a safe bet. I kept thinking, there MUST BE SOMETHING ELSE that I can do for him. I remember asking one neonatologist, “Is there any way that I can help my baby recover his gag reflex?” She said, “Not really. If the part of the brain that is injured were to heal over time, that gag reflex might just turn back on.” Although it didn’t give me a ready course of action, I found a glimmer of hope in that statement which I have carried with me ever since.
After more research, particularly from reading the book, “What To Do About Your Brain Injured Child” by Glenn Doman, I learned that cerebral palsy, downs syndrome, autism and developmental delays are all names of symptoms that occur when the brain is injured. In other words it is the brain that should be treated as well as the symptom of the injury.
There were three therapies in addition to traditional physical and occupational therapies that jumped out at me to possibly help my guy. These were Cranial Osteopathy, Vital Stim Swallowing Therapy and Hyperbaric Oxygen Therapy.
Cranial Osteopathy is a specialized form of osteopathy that concentrates on the fine movements of the cranial (head) bones. The brain is immersed in a fluid called cerebro-spinal fluid that bathes and protects the tissues in and around the brain. By manipulating the bones of the head and face the cranial osteopath can encourage and improve the circulation of cerebro-spinal fluid, helping the body restore itself to health. This can be particularly helpful in babies whose heads have undergone some trauma in birth.
VitalStim Therapy is an innovative therapy for patients who are unable to swallow. It has been used on stroke patients or victims of other types of brain injury for some time but its use on babies is fairly new. There are about twenty NICUs around the country who are researching its effectiveness in infants. It is a non-invasive, painless treatment that uses controlled neuromuscular electrical stimulation to strengthen the muscles used in swallowing. It utilizes a special type of neuromuscular electrical stimulation in which small electrodes are placed on the throat to stimulate the muscles involved in swallowing.
Hyperbaric Oxygen Therapy was the third alternative therapy that I looked at. Hyperbaric Oxygen Therapy (or HBOT, as it is commonly called) is a treatment in which the patient goes into a chamber which then fills with pressurized oxygen. The oxygen bypasses the normal respiratory systems of the body and is pressed into every cell of the body promoting healing of injured or inflamed tissue. I learned in my research that although it is outside of the realm of traditional medicine, HBOT holds much promise for healing brain injuries.
A plan of care began to take shape in my mind and I began to search for practitioners of these three therapies. I found a Cranial Osteopath in Santa Monica and a Vital Stim therapist in Pasadena. Getting my son Hyperbaric Oxygen Therapy was a little more daunting. I found two clinics in the Los Angeles area and to do the starting recommended doses of 40 rounds was going to cost $8,000 at a discounted rate of $200 per session by paying for all sessions up front. $8000? Just to get started? Yikes! Through a friend of a friend, Joe and I were introduced to Stan Kurtz and Generation Rescue. In our first conversation with him on the phone, he offered to help by letting us use his HBOT chamber. A few days later Stan helped Joe take Maceo on their first “dive”.
By this time Maceo was three months old and we had been home from the hospital for a month. Those were very difficult days. We were coping with the regular ups and downs of being new parents in addition to Maceo’s constant discomfort due to his many physical problems including:
•A constantly arching body, rife with tension from two months in a NICU bed
•Very stiff legs and spastic arms
•Congested chest and upper airway due to thick, loud and rattling secretions which required frequent suctioning of his nose and mouth
•Oxygen dependence with the nasal canula taped to his face and an oxygen tank we carried with us everywhere
•The ever present risk of him aspirating on secretions or the breast milk he was being fed through his G-tube .
Since returning home, we spent pretty much all of our time at follow-up doctor appointments at Children’s Hospital, seeing the osteopath in Santa Monica, the VitalStim therapist in Pasadena or staying at home loving and trying to learn how to take care of our little guy.
The day we went to see Stan to do our first dive, Maceo fell asleep before we got in the car and slept all the way over to Generation Rescue. Up until that point every time we had gotten in the car he cried and cried. Thankfully on that day, June 11th, he napped all the way there and all throughout the 60-minute session in the HBOT chamber. He woke up just after getting out and the first thing we noticed was how loose his body was. He sat in Joe’s arms, very alert, looking around at the three of us and making eye contact, which was rare before the session. His breathing was clearer and quieter. The most exciting thing that happened is that he started cooing almost continuously. We had heard him coo a couple of times total so far but after this session he kept cooing one beautiful sound after another for about ten minutes!
About ten days later Stan Kurtz and the great people at OxyHealth arranged for a HBOT chamber to be delivered to us for use at home. We have been taking Maceo in once or twice a day for the past two months. I am very happy to report that as of last night he has done 105 hours of HBOT. Having the chamber at home has been key because we are able to take him into it in the morning and/or night, depending on what’s happening with him. Instead of having to get in the car and travel to a clinic and go in at a set time, either Joe or I will hop in with him whenever it is best for him, usually when he falls asleep for a nap or at bedtime.
There have been MANY big beautiful changes as a result of the hyperbaric oxygen therapy. The first major change was that his gag reflex has indeed “turned on” as the neonatologist had indicated could possibly happen if his injury healed. This, in combination with a very strong and productive cough which also appeared since beginning the therapy, indicate that now my baby can protect his airway. He can get rid of what he may have aspirated on before! This is a MAJOR HURDLE! Next what developed was an ability to feed by mouth. The doctors had told us he might never learn to swallow. Well, he has learned to swallow and there is no better feeling than to see and hear him gulp down his pears with rice cereal! He is still not able to manage liquids but we know that that will come. His secretions are way down and are not constantly coming out of his nose and mouth the way they were before. He has a much easier time breathing and requires much less suctioning throughout the day. He has been weaned down to half a liter of oxygen and will soon be completely off of it. The spasticity and tremors in his body are gone and arms and legs are much more relaxed. He is cooing and gurgling and blowing raspberries throughout the day and we are now, as of a few weeks ago, seeing beautiful smiles!
Since starting hyperbaric oxygen therapy, life has changed so much. I believe that all of the therapies that we do throughout each week have combined to help heal Maceo’s brain injury, though I have the very strong sense that without the HBOT treatments oxygenating his brain each day, our progress would have been dubious.
Sometimes Joe and I look at each other and say, “Can you believe it? Remember that first month after coming home from the hospital and how rough things were? Remember how the future felt so dark and unwieldy and how dreadful it was waking each morning?” In those moments we’d look at each other and one would say to the other, THINGS ARE GOING TO GET BETTER. THEY HAVE TO!’”
Today Maceo is 5 ½ months old and although we have more work to do to get him caught up with some developmental milestones, life is becoming sweeter every day. The idea that keeps returning to me now is how important it is for parents of kids with brain injuries to not only get HBOT and other “alternative” therapies, but for those parents to be actively empowered to be their child’s greatest advocates. I wish that I had had a “me” to talk to when this whole adventure first started. We thought we were going to the hospital to have our son and then go home a day or two later. We never imagined that we would spend two months in the hospital with a medically fragile child and that he would be sentenced to a life of severe disabilities and difficulties. It was incredibly confusing and scary being told that there was not much I could do to help my son. I did bite the bullet and found other things to do for Maceo besides conventional therapies but I still feel almost lucky to have somehow made the decision to disagree with the prognosis given. It was difficult to do. Sometimes I felt really foolish saying to the doctors, “Are you sure there’s NOTHING else I can do?” or “How do you KNOW he’s highly likely to have cerebral palsy?” or “Isn’t there ANYTHING else we can do to help him?”
It has become very important to me to get the word out to other new parents that it is not only okay to question the doom and gloom they may be presented with, but that it is vital that they do! There was one pediatrician named Dr. Guy Effron who said to me, “You will be your child’s greatest advocate. His success in life depends on what you do now”. I will always be grateful to Dr. Effron. Those words have stayed with me and at times were the engine that got me out of bed and back onto the battlefield each day. I would like to say those words to others who need to hear them. This testimonial is the beginning of that mission.
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Nice work Holly Palmer.
Relentless, tender and inspiring as ever
I was a bit worried as it had been a bit quiet on the blog front from you guys recently but your good news has brightened up my morning.
Good luck to you, Joe and Maceo.
db
Comment by David Barratt — October 18, 2009 comment link
holly. i have no words to actually get out the admiration. I’m sitting here crying but thats not what I want to express — I want to express my joy for you and joe with some kind of amazing ballet i could perform for you in the streets, possibly naked. THATS how filled with joy I am for you. What you have done.. Man. what you have done…
Comment by paige — October 18, 2009 comment link
Wow Holly. I am so awe-inspired by you, Joe and Maceo. Good for you for following your instincts and questioning everything. Maceo is one lucky little man. I love you all.
Comment by Caitlin — October 18, 2009 comment link
There really was never a doubt in my mind that you would make this happen for him, Holls. His progress sounds amazing! I can’t wait to see him and hold him and say “way to go Mr. Maceo!”
Comment by Mollie — October 18, 2009 comment link
I can see you both in him!! Your beautiful lil guy is so
very lucky to have you Holls for his mommy. I am
confident that all of your being is going to him. I hope
you and your hubby are taking at least a little time
for eachother to bond during this difficult time.
Time doesn’t wait.
I am sending hugs and love to you all as I
write. Prayers are a given.
Love, love, love,
Ali Evors (Bloeser)
Comment by Ali — October 18, 2009 comment link
wow this is so incredible, so well written and truly inspiring. you guys are amazing.
Comment by alex — October 18, 2009 comment link
You guys are tremendous.
My admiration for you and your tenacious, determined spirit overcomes me each time I watch a video or read your blog. I won’t stop putting this website out on every channel I have because you deserve all the support in the world.
As I ready myself and my life for becoming a father in less than a month, I can’t tell you how much I am pulling for you and your beautiful boy. I can’t wait for our sons to run and play together.
You are truly special people.
Comment by Charlie — October 18, 2009 comment link
Hi!!!
We admire so much your energy and strength, Holly and Joe, and how you are fighting for little Maceo. You are amazing parents! It is so great to hear how well he is responding to all different cures that he is getting.
A big hug from Johanna, Ulf and Louise
Comment by Johanna, Ulf and Louise — October 18, 2009 comment link
I hope you can feel a big warm “northern hug” coming your way! Someone once said, that it is hard to describe a parent´s love, especially mothers`s love—- when you finally dear, and allow yourself to completely fall in love with your own child, this love becomes almost dangerous, as to where other people are concerned. It makes mothers lionnesses, who would do anything for their babys….
This picture of you with Maceo just brought that text to my mind, I think it was written by a mother, a lionness, who had her own story to tell…
You guys look so cute, or maby it´s just that I can´t get my eyes off your boy!
All the best for your whole family, and sorry, my English is a bit rusty.
Paula
Comment by Paula — October 18, 2009 comment link
hi guys we live in the uk and from what you written we think it sounds very similar to my brothers son who is now 4 months and we are being told by the doctors that there is no hope for him and they say they need to fit a peg feed and tie the top of his stomach has got to be tied but he has no gag reflex and everything you have explained.he is now back in hospital as he has chest infection so the operation has been put on hold as he so weak as he keeps bringing his milk back through his nose.we are going to put forward what you have done with regard treatment to doctors and see what happens.best regards lisa.hope everything goes well for maceo
Comment by lisa challenor — October 27, 2009 comment link
Hi you e-mailed my sister in law lisa about my son mason he has hie too the same as your son amongst a few other problems…would be goood to talk to you if you could e-mail me. hope to speak soon your an inspiration x
Comment by alice — October 28, 2009 comment link
Hey guys,
The website looks great and I love the blog! You need to get on Oprah!
Seriously, you are amazing parents. Maceo is a lucky boy and you are both lucky to have him.
I love you all. Let me know what you need.
Love you,
Joava AKA Nanny Goat
Comment by Joava Good — November 2, 2009 comment link
Wow!! I didn’t know so much of this was happening and what you guys have been going through. True warrior spirits all three of you are. You will be able to help so many people in the future from this experience. My niece was born with many of same the same problems with some variations. As a result she had so many painful surgeries before the age of 2, and beyond, that many adults wouldn’t be able to endure. The outcome wasn’t as near successful as by Maceo’s age. Albeit she is doing better at now 7 years old, the invasive factor of what she has been through has caused more problems. This oxygen treatment sound amazing. There is usually alternative treatments available for most everything it just takes that special effort and drive to find it, to turn left at time when it takes the most courage to do so. You guys have done so right by Maceo it brings tears to my eyes. I send you an ENORMOUS amount of love, light and strength. Please PLEASE know that I am always here for you should you need ANYTHING!! I love you – Deneen
Comment by Deneen — November 26, 2009 comment link
Dear Ones, Your story is an inspiration to all who read it…. and a road map of the path to success despite the chaos of physical injury. Your story is vital information for all the
nurses, doctors and therapists who spend so many hours with these fragile NICU children in their first hours / days / weeks / months before they go home. I will continue to follow your story and successes so that I can offer the same hope to other parents I meet in the NICU with similar challenges. You are living proof that truth wins over adversity. Much Love, Kathy
Comment by Kathy — January 25, 2010 comment link
What an inspirational story! Your words are touching the hearts of so many people you don’t even know and will never meet. I heard about your blog from friends who are in a similar situation. Meceo’s story is giving them and probably many other people hope, energy and renewed strength to carry on. You will be in our hearts and prayers. Warm South African love!
Comment by Sanet — March 4, 2010 comment link
Hi Holly,
VERY inspirating for us. We have no diagnostic, the doctors have no idea for our Leeann but it all comes back to the same symptoms Maceo has and I cannot thank you enough for sharing your journey as I too, will do some hyperbaric oxygen therapy once and when she gets out of the hospital.
My very best wishes and prayers are with your son and my daughter,
Nancy
Comment by Nancy Drouin — June 6, 2010 comment link