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Baptism Confirmation Ink Slingers Last Rites/Anointing of the Sick Molly G Parenting Pro-Life Issues Special Needs Connection

Seeing Faith: Believing as a Special Needs Parent

When I first heard we were doing a special needs series, I was very happy to contribute and had many ideas flowing. There are so many areas in our faith and faith lives that we can use a voice and guidance. However, the very day this happened was the day my daughter was discharged from the hospital after a month long stay. So today, I will share with you her story and get this series started with some very amazing things that happened.

December 27 started like any other day for our family.  It was my husband’s birthday and we had a lot of family plans including cake and presents.  Halfway through opening presents, Meagan came over to me, put her hands on my leg, and said, “Mommy, my head….” The next thing we knew, she was on the ground out of it – her head bulging, and her eyes glassy. Shortly after she was pressure vomiting and turning color, and I knew we had to get her to the hospital as soon as possible.

For those that don’t know our story, Meagan, my fifth of six daughters, was born with congenital hydrocephalus (fluid on the brain). She was shunted at birth, and since then has many other diagnoses that we have dealt with over her 5 1/2 years including epilepsy, chiari malformation, failure to thrive, developmental delay, and many other difficulties. She has had 19 brain surgeries and many other hospital stays and procedures, and daily life with her is nothing short of adventure. I thought we had seen it all with her, as several of her stays and surgeries had been quite serious – until this last time. 

By the time we got Meagan to the hospital, she was grey and not breathing well. The respiratory team tried to help her as best as possible, but her body wasn’t responding. She then started seizing and going downhill. Her carbon dioxide was through the roof and she wasn’t able to breathe on her own. They had to intubate. Unfortunately, she was still pressure vomiting from her shunt failure, so because of what can only be described as the perfect storm, she aspirated. The neurosurgeon took her to surgery and externalized her shunt to relieve the pressure, but the spiral was already too deep. Meagan was not able to breathe on her own and was a very sick little girl. The week following in the PICU, she was fighting aspiration pneumonia and then contracted RSV on top of it all the week after. It was a snowball effect, and any medical mama knows its the secondary infections that worry us most. It sounds crazy to think I was ‘comfortable’ with brain surgery, but that is Meagan’s life. Once aspiration pneumonia and RSV piled on, I was very worried. It was probably the first time in her many surgeries and hospital stays I was concerned she wouldn’t recover.

In times like these, anyone of faith typically turns to that faith as a comfort. But there is just an intensity that is added when you are a parent to a special child. Everyday is such a struggle, that the yearning for them to get well and fight another fight is strong. You know every time they have met challenges, the walls they already fight to break down, and many other hard times they have encountered – so when they are really down, it is a beyond desperate situation. I knew this time was different – that trusted “mom gut” was very apprehensive and not feeling good about Meagan’s situation. So I turned to the only place I knew had more control than I did – my Catholic faith and God who had been with me since before Meagan was born.

Probably towards the middle of Meagan’s precarious stay, I was on pins and needles. Those who know me well could read between the lines of my updates – this was serious and she was really bad. Meagan had been rushed from birth for her first brain surgery, and was baptized and confirmed at birth. So she already had so many graces to help her along, but this time she would need any help she could get. In hindsight, I see that God was showing me signs along the way. At the time I didn’t realize what they were, but now I see He was offering me comfort and hope.

The first chance I got at Children’s, I had a priest come and give Meagan Anointing of the sick. Not too long after, I had a friend offer a St. Gerard cloth to use to pray with Megs. Our parish priest also came and gave her Anointing of the Sick just a week later. And a family member had a priest say Mass for Meagan at Medjugorje when they heard of her precarious state.

When Meagan was not recovering well, a friend of mine had asked if I had any way to get her some Lourdes water. I told her no, I didn’t. It was a great idea, but I didn’t have a way to get her any at that time. The very next day another friend contacted me asking if she could come visit. I said sure and she made her way to the hospital. We sat down and she took out a package. The first thing she took out was a very sacred relic of St. Theresa that another friend had sent her to be brought to our room for Meagan. Meagan’s middle name is Theresa. The second thing she took out saying to me, “I’m not sure if you can use this, but I thought Meagan could really use it right now and I want you to have it.” I took the bottle from her and then saw it was Lourdes water. I got goosebumps. There was zero way that my two friends knew each other and zero way that this friend knew we had discussed Lourdes water for Meagan. It was truly a God moment in a very dark time. 

Not too long after, I was talking with one of my very close friends. She had mentioned St. Joseph oil that would be good for Meagan, but she wasn’t sure where it had gone. It had been her mothers, which was extra special because she prayed a lot for Meagan, but a lot had been happening and she was sure it had been misplaced. The next day she called me and said she had opened a drawer and the bottle of oil was there. She said she would place it in the mail and send it to Meagan. Around the same time, several families organized a local prayer vigil for Megs and brought together people from all aspects of our life at a local venue to pray. The night ended up being very stormy with rain and thunder and lightning all over the place – yet, they still showed up and it was an extremely moving service. 

Meagan had a very tough time with the RSV. She was already struggling neurologically and was fighting the aspiration. But the RSV on top of it all was really bad. She would cough and cough and cough and she would struggle immensely. Her oxygen would drop and it would be a challenge for the nurses, doctors and respiratory therapists to bring her back to a normal saturation. Meagan was still intubated at this time, so they would suction her many times, and all we could do was sit there and hold her hand and talk her through it. She wasn’t awake, but I knew that somewhere deep down, she had to hear me.

One night, Meagan was worse than ever. The coughing fits were constant and she was really struggling. The doctors and therapists were amazing, but she was really having a bad night. I took some of the Lourdes water and rubbed it on her chest praying for relief for her. Soon, her oxygen recovered to a good saturation and she came out of the coughing fit. The therapists were able to suction the sticky and thick phlegm from her lungs for the first time and she seemed to be more comfortable. It was the first time I talked to Meagan and actually saw response from her in her face. I couldn’t believe it because we had not seen much improvement at all before this. For 3 weeks I had waited for signs of my daughter, and that night I got it.

That morning after her terrible night and the storms during the prayer vigil, we had several people text us with pictures of clouds opening with sunlight shining through, and rainbows covering the sky. It was more symbolism that she had turned the corner and was going to be okay. She had overcome several complications, two illnesses, a shunt failure, seizures, and her 19th brain surgery and was once again coming home. After over a month of uncertainty, I was finally given the signs that she was on her way to recovery. Looking back on this last stay with her, I think it was a big reminder of how much we don’t control with Meagan’s life. I think that is something that is hard for special needs parents in general, and a big reason I am thankful for my faith and the signs we were given along the way.

As a special needs parent, you are always in fight mode. Even when your child is doing well, you are preparing, gathering, and learning. You are always on alert and always looking ahead to the next challenge that lies ahead. Are Meagan’s eyes glassy because she’s tired or about to seize? Is Meagan tired because of normal growth, or because her shunt is failing? If Meagan gets sick again, is she going to be able to fight it at home, or will she be back in the hospital fighting for her life? The biggest struggle I face as Meagan’s mom is recognizing and accepting that I don’t control everything in her life. I can be her best advocate, physically and spiritually, and still, I cannot control what ultimately happens. 

As a Catholic mom of a very complicated daughter, our faith has helped me better understand the lack of control we have in lives of our special kids. The faith grounds me when I feel lost, it pushes me when I feel challenged, and it comforts me when we are in times of need. For our family, it’s a great source of strength – and I am so happy that this series is started to help guide us through this journey we are on together. As special needs parents, we know that there are just aspects of our lives that no one else gets except other special needs parents – and this is also true when navigating areas of our faith. We have encountered many challenges and even road blocks along the way, and those times have sparked questions and discussions that I think is important we have as Catholic parents. 

As tough as those times have been, however, I do know one thing – it has made us stronger to hold on to our faith because it is times like Meagan’s most recent stay where you are sitting in a dark hospital room, ice cold as they try to stabilize your child, the only sounds around the beeps of her machines and the bustling of the nurses and doctors trying to help her the best they can.  All you can do is sit there and think, “Not after all she’s been through.. this cannot be …” But luckily for us, we have a light in the darkness – we have a string of hope in very hopeless times – our Catholic faith. 

I’m very excited to go on this journey with you, and discuss ways we can make our everyday experiences even better for those of us who have been privileged enough to have a child with extra challenges. Meagan is a gift. Our faith is a gift … sometimes she sees things that I don’t see … and makes other things come together that we would have never thought possible. We now have the opportunity to share with each other how we can make our faith experience better than ever with our special kids, and from there show the world how much they can teach us and bring us closer to God. 

Meagan asking her sister about Joseph and Jesus
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Molly G Motherhood Parenting Pro-Life Issues Respect Life Respect Life Month

The Promise of Cord Blood Research

Meagan was our fifth child, so ultrasounds were nothing new to me. I remember seeing the solid black in the picture of her head on the screen and having a hunch something was not right.   Turns out my gut feeling was correct.

20 weeks into my pregnancy, our unborn daughter was diagnosed with severe fetal Hydrocephalus.  The  cerebral spinal fluid was gathering in her head where brain tissue should have been.  What tissue was left, was under immense pressure, which grew by the day as the fluid continued to gather.  It is fatal if untreated, but the treatment  could not be done until after birth.  I was immediately asked if I felt I should continue my pregnancy, followed by a grim “counseling” session from the genetic counselor.  I knew of course I would love my daughter no matter what, but even so,  I felt my heart, and my world, come to a stop.

Meagan minutes old ready for transport to Children’s Hospital for brain surgery

The night we got home, I frantically searched the internet for any and all information I could find on my daughter’s newly diagnosed condition.  I wanted to read something that showed me the Perinatologist was wrong.  The more I read, and the more scan pictures I compared to Meagan’s scans, the more I realized the diagnosis was not a dream.   Almost everything I read was “doom and gloom,” but the one thing that was a common thread in any article was the prognosis.  In a word, prognosis was “unknown.”  It could vary greatly for every child depending on how much quality brain tissue was salvaged from the damage.  I began shifting my focus  on the internet to any new Hydro research that could help Meagan’s prognosis.  I knew her life and future was in God’s hands, but, I also knew God gave us the wonderful gifts and talents we have so we can help others.  I thought, maybe, there was something out there that could at least give Meagan a better shot at being the best she could be.

 

I remember distinctly my feelings when I found out about a Hydrocephalus study happening at Duke Children’s.  The reason I remember these feelings so clearly really comes down to two words that stood out to me in the article; stem cells.  I felt elated at the prospect of Meagan being involved in a Hydro study and possibly giving her a better chance in the future, but at the same time I felt a knot in the pit of my stomach because I needed to know more about how the stem cell aspect of the Hydro program worked.  I immediately felt conflicted – almost sick to my stomach.  I had found the one glimmer of hope for Meagan’s future, but knew if there were any ethical questions surrounding the stem cells to be used on her, I had to re-examine our involvement.  I obtained the doctor’s email through another Hydro family I had “met” online.  I emailed several questions I had about the program, and waited.  The wait for my answers seemed like an eternity.  The doctor was actually very efficient in her response time, but, when waiting for news with such important consequences, the minutes can seem like days.

 

Meagan’s MRI at birth. At 37 weeks she was born with a 49cm head. An average newborn has a 34cm head. The small grey line on the left is all that remained of her brain tissue at birth. The rest is all fluid.

It probably seems crazy to some that I would even consider turning down such an opportunity for my daughter.  But I was prepared to do so if it turned out the cells were altered in any sort of unethical manner, or if any embryonic cells were used along the way.  I won’t sugar coat my feelings at the time – I certainly felt if any thing negative surfaced from my inquiries and I had to decline involvement in the program, my daughter would be cheated again.  She was cheated out of her health, and now she would be cheated out of the one program that offered a glimmer of hope.  But at the end of the day, my obligation to my daughter was to help her, and trust in God through the amazing faith He had given me, without crossing ethical lines to do so.

 

The much anticipated email came from the doctor.  I felt like a huge weight had lifted off my shoulders.  Meagan would receive her own cord blood stem cells, plain and simple!  There was no alteration of the cells or involvement of other embryonic cells in her study.  It was simply re-infusing Meagan’s cord blood cells back into her body.  The hope was for the cells to go to areas of the brain that were under the most pressure and mitigate some of the permanent damage.  By no means was this a cure for her Hydrocephalus, as much as it offered a hopeful “boost” for brain tissue – or perhaps other areas of Meagan’s body that were affected by the Hydro, such as muscular regions, vision, hearing, or any other area that may have been affected.

 

Meagan during one of her stem cell infusions with my husband, the doctor, nurses, and the music therapist.

This whole experience with Meagan really made me think more about stem cell research as a whole.  For so long, we have been pushed into the idea that the only hope rests in using embryonic stem cells for cures to cancers, other diseases, or to help children like Meagan with lifelong conditions have a better future.   Why are we constantly led to believe there are no other options? Why should we feel caught between helping people and crossing ethical lines when we now have a beautiful medium between embryonic stem cells and adult stem cells – those cells found in cord blood.  These stem cells are showing immense promise across the board in the treatment of several diseases or conditions, such as the recent stories of cured brain cancer in Spain, or new trials to see how cord blood cells can affect children with Autism right here in the United States.  Many parents cannot afford to personally bank the blood, so most cord blood is simply thrown away.  Some public donation banks do exist, but there needs to be more.  I can only imagine all the stem cells we would have available for further research, all while respecting the sanctity of human  life, if cord blood donation was the norm.  There have been some pioneers in cord blood research, such as the Duke Children’s program where Meagan goes, or other places such as Mercy Medical in Maryland that just started the first public cord blood banking system for the state, thereby opening people’s eyes to the potential that lies in donated cord blood stem cells.

 

The very night Meagan looked at me for the first time.

Meagan has now had three stem cell infusions at Duke.  After her first infusion, I started to notice a very sudden change in her vision.  I noticed her following me across the room, looking up at her mobile and trying to focus on the toys hanging above.  I noticed for the first time, as I looked in her eyes, she was actually seeing me.  For so long she had looked “through” me, but now she could actually could see her mommy.

  Meagan’s second infusion was done around six months old, and again, I noticed a sudden change in Meagan.  This time, it seemed to be cognitively. She was still floppy with no head control, but she started to smile on demand and communicate in her own ways with my husband and me.  She began to react to her sisters’ silly antics and for the first time, seemed to “take in” the environment around her and became interested in her toys.

 

Meagan smiled non stop after her second infusion

We just returned from Meagan’s third infusion earlier this month at almost thirteen months old.  I have seen a rapid change in her use of her arms – she went from no weight bearing on her arms before the infusion, to suddenly having no issue doing so when I prop her up.  She also is eating. This is a huge change. Meagan has had horrible eating issues since birth.  She has been losing weight for months and has had zero progress with feeding therapy.  After 6 months and two therapists, we still couldn’t get more than 4-5 ‘licks’ of food into her mouth.  Post-infusion, she now opens her mouth when I offer baby food and swallows it. She has never done this before. As a matter of fact, her eating skills were reverting before this last infusion.

For the first time ever, Meagan has suddenly been putting her arms down on her own. Prior to her third infusion, they would flail out to the side and be floppy.

 

To say I am a believer is an understatement.  I have seen the abrupt changes that have happened in the weeks after Meagan’s stem cell infusions.  These little changes may mean something for Meagan’s future. I feel so extremely grateful she was able to be a part of the study.  What makes me even more grateful is that we were able to participate in a program that used cord blood stem cells, while at the same time recognizing man’s God given skills to use those cells in life changing ways.

 

For me, though swirling with conflicted feelings at the time, I know I’d make the same decision again.   Having been faced with the question myself of terminating my pregnancy with Meagan, I could have never destroyed another life to better hers.  It would make me no different than the doctors who saw Meagan’s life as worthless.  

We should celebrate the ingenuity of man’s research, but always remember that respect of human life is of utmost importance.  Now with the promise of cord blood stem cells, we have an obligation to pursue this new ethical path of stem cell research. There is no reason we should have to destroy embryonic life when there are practical paths to the same end that uphold the responsibility we have to protect all life.  In a document from the Pontifical Academy For Life regarding stem cell treatments, it reads,

“A good end does not make right an action which in itself is wrong.”     

There has never been a truer statement, and I’m pretty sure Meagan would agree.