The day that my husband, Angelo, and I found out we were expecting our first baby was one of the happiest days of our life.  I had anticipated having morning sickness, lack of energy, and all of the other typical pregnancy symptoms, but I had none of these.  Instead, I felt more energized, healthy, and happy, which lasted throughout most of my pregnancy.  During the last few weeks of pregnancy, I had some lower back problems that forced me to stop working and relax – something I have always found difficult to do.   My due date, which was November 12th, came and went, and I started to become very anxious.  On Thursday, November 17th, I went to Bridgeport Hospital to be induced.  The medicine did not work, so it was stopped that evening and we waited until the next day to try again with something different.  The new medicine was administered that morning and it worked immediately. I was in full blown labor within 2 hours! 

On Friday, November 18th, 2005 at 2:43 p.m., my husband and I became the very proud parents of our first child, Angelo James Magliocco.  The doctor had to cut the cord from around his neck and suction out his nose and mouth.  We nervously waited to hear his first cry, which seemed like forever.  While he was being cleaned up, we finally heard that cry, which brought tears of joy and relief to both of us.  The nurse handed him to me swaddled tightly in a blanket.  The feeling that I had at that very moment is almost indescribable.  Your body fills up with so much love and happiness that it feels as though it’s seeping out of your skin!

Angelo James weighed in at a healthy 7lbs. 13oz. and measured 20 ¾” long.  He scored a 9.9 on the Apgar scale, which is the highest you could possibly get.  He was very alert and had the most beautiful blue eyes, which I could not stop starring at.  I took in every inch of his perfect little face, while running my fingers through his full head of soft, wavy brown hair.  I must have kissed him 100 times, something I waited to do for 41 weeks!  Angelo did very well with his first bottle feeding, which my husband had the honor of doing.  He seemed very content no matter what he was doing or who was holding him.  His cry was very sweet, and he was easily consoled.  His pediatrician, Dr. Esposito, came to check on him and said he was doing great.  We were able to take him home on Sunday, November 20th, a crisp and very sunny fall day.  We were so excited to get him home to show him his “safari themed” nursery and all of the toys that everyone had bought for him.  It was very quiet compared to the hospital because it was just the three of us.  We sat together for awhile and just watched him sleep, amazed at what our love had created.

We loved changing little Angelo’s diapers and getting him dressed.  He always seemed like he enjoyed these moments as much as we did because he never fussed or squirmed.  Bath time was a favorite for him because he loved the feeling of the warm water on his body.  It was our favorite time, too, because we loved to snuggle with him afterwards. He smelled so good and clean in his “jammies” and his skin was so soft.  We felt like the luckiest parents in the world to have such a happy and content baby. 

On Wednesday, November 23rd, Angelo James had his one week check-up with Dr. Esposito.  He was only 5 days old, but because of the holiday, we had to get him in.  The doctor weighed him, measured his length, and checked him over thoroughly.  He said that little Angelo was doing great and already growing so quickly!  It was a perfect check-up.     

On Thursday, November 24th, we celebrated our first Thanksgiving together.  We went to visit with Mimi and Papa (my parents), where we had dinner together.  Auntie Janine, Uncle Todd, Cousin Ashley, Nana, and Great Grandpa were all there taking turns holding him while we took pictures.  Next stop was at Auntie Lucy’s and Uncle John’s house.  Everyone was there waiting to see little Angelo - Bibi and Nonno (Angelo’s parents), along with Auntie Mary, Uncle Rich, and cousins Krystyna, Tiffany, Erika, Danielle, and Richie.  Everyone got a chance to hold him and to get their pictures taken with him.  He did so well that day considering how many pictures were taken and how many times he was passed around.  It was so nice to spend the day with our families, but we were happy to get him home that night so we could have him all to ourselves.

On Monday, November 28th, Angelo had another check-up with Dr. Esposito.  He was 10 days old, so this was considered his real 1 week visit.  He was thoroughly examined, weighed, and measured.  Dr. Esposito said that Angelo was doing very well. 

During the next 2 ½ weeks, my husband and I began to comment more and more about little Angelo’s “laid back” personality and quiet cry.  He always seemed so comfortable and relaxed when we held him, and he hardly ever cried.  We felt that this was his way of telling us that he was happy and content, and that we were doing a good job as first time parents.  When I changed his diapers and got him dressed I did it very quickly because I didn’t want him to feel cold, and he was always swaddled in his favorite blanket to keep him warm. Because of my concerns for him, it was difficult to see that he wasn’t moving around a lot. 

One Friday afternoon, while I was feeding Angelo a bottle, I started to watch a program called “Bringing Home Baby”.  It was about a couple who had just brought their 3 day old baby home from the hospital and it followed their story for the next month or so.  I noticed that when the parents were changing her diaper, she was kicking and squirming a lot.  This was something that I had never seen my son do before.  My heart sank and I became very concerned that something was wrong.  I immediately called my husband to tell him about this and hoped that he would tell me I was just over reacting.  Instead, he told me that he was going to call the doctor and that we should take Angelo in to be checked out, just to be on the safe side.  He seemed very calm about this, but he was just as concerned.  Apparently, just a few days prior to this, my husband was comparing baby stories with a friend who had a newborn around the same age as our son.  His friend had told him how difficult it was to change his daughter’s diaper because she moved around a lot.  Angelo told him that we had an easy time changing our son because he was so laid back.  He had no concern at this time, but that quickly changed after my phone call.

We took little Angelo to see Dr. Esposito, who thoroughly examined him.  As he did the reflex tests, we knew something was very wrong.  We were told that Angelo had very poor reflexes and that we should bring him to Bridgeport Hospital immediately for further testing.  Dr. Esposito could not be certain as to what exactly was causing the poor reflexes, but told my husband to be prepared for a tough road ahead.  As we drove to the hospital, we tried to be hopeful and positive that this was just something that could be treated with physical therapy.  We never imagined what we were moments away from hearing.

Angelo James was immediately taken in to see the doctors.  We told them why we were there, and they started to examine him while asking us a billion questions.  My head felt like it was spinning and my heart felt like it was about to jump out of my chest.  I could not believe that this was happening to us.  They noticed immediately that his oxygen levels were very low and so he was given oxygen through a nasal canula.  The worse was yet to come, as the doctors told us the best and worse case scenarios.  When they told us that the worse case was a fatal disease called Spinal Muscular Atrophy (SMA), I went into shock and denial.  There was no possible way that our son could have that.  He seemed so healthy, besides not moving his limbs that much.  The doctors briefly explained a little about SMA and that they needed to confirm this possibility with a DNA test.  In the mean time, they began to run tests to eliminate other possibilities of what could be causing these symptoms.  Every time a test came back negative, it meant that there was more of a chance that our son had SMA. 

Little Angelo was admitted to the hospital that night so the doctors could run more tests the next day.  He was so good the whole time, even when it took 30 minutes for the nurses to draw his blood!  I held his hand and never left his side, except when they did a spinal tap.  No one is allowed to stay for that.  He also had an MRI, which looked at his brain.  There were so many things that they tested for, and each result came back negative.  My husband and I had a very bad feeling that our son had this horrible disease.  The way the doctors described it to us made it seem like there was no hope and that we would most likely lose him within 6 months.  Not knowing what was going to happen to our son, we felt that it was very important to have him baptized immediately, even though we were in the hospital.  On Saturday, Dec. 17th, Monsignor Dora came from Saint Teresa’s Church to perform the sacrament of Baptism.  Both of our families were there for the ceremony.  My sister, Janine, and our brother-in-law, John, were asked to be Angelo’s godparents.  Our faith plays an extremely important role in our lives, and this was one of the most important things we felt that we could do for our son. 

On Sunday, December 18th, Angelo turned one month old.  He had to stay at the hospital one more night for observations, but we were able to bring him home on Monday.  This was very scary for us because Angelo was still hooked up to an oxygen tank and a pulse oximeter machine that measured his oxygen level and his heart rate.  At this point, we had to wait 3 weeks until we would know the results of the DNA test for SMA.  All we could do is hope and pray for the best.  We moved Angelo’s crib into the living room, so we could constantly keep an eye on him.  We were always looking at the pulse oximeter machine to make sure his numbers were at the right levels.  Our family and friends were there for us to help out in any way possible, especially our mothers.  They took turns sleeping over at night to help me out with feeding him so I could try to get some sleep. 

We decided to take little Angelo to Yale University Hospital for a second opinion.  We met with several different doctors including a Geneticist, a Pediatric Neurologist, and a Pediatric Pulmonologist.  After examining our son, they all felt that he showed many signs of Spinal Muscular Atrophy (Type 1), which is diagnosed before 6 months of age.  Even though we were still weeks away from the test results, we decided to prepare ourselves for the worse and to do whatever we could to help our son beat the odds.  We found little encouragement and hope from any of the doctors we met with, but we were not about to give up.  This is when I called Kelly Takacs, the mother of a little boy, Ethan, who was diagnosed with SMA Type 1.  She was so well educated about this disease and gave us the hope and encouragement that we needed to fight for our son.  She told us about the Birth to Three Program that provides therapy for her son and about Dr. Bach, a physician in New Jersey who could possibly help us.  We made an appointment with Dr. Bach and started the Birth to Three Program.  They sent a nurse to our house twice a week to examine Angelo’s vital signs and to show us different things we could do to help keep him comfortable while sleeping and playing.

On Friday, January 6th, we took Angelo James to see Dr. Bach.  On our way there, I received a phone call from our pediatrician regarding the DNA test results.  He confirmed what we had been preparing for during the last 3 weeks.  The test showed that our son had SMA Type 1.  At this point, we could only hope and pray for a miracle.  We met with Dr. Bach and Lou Saporito, a respiratory therapist.  The first thing they said was that we needed to get our son off of the oxygen because too much oxygen is toxic to SMA patients.  They wanted to see what would happen when the oxygen was removed.  To their surprise, Angelo immediately showed signs of respiratory distress.  Dr. Bach’s exact words were, “Wow, that’s the first time I’ve ever seen that happen.”  My husband and I just looked at each other and knew that couldn’t be good.  The doctors, however, seemed very confident that we would eventually be able to take Angelo off of the oxygen, which would be an important step in improving his respiratory function.  They told us all about their non-invasive protocol, including all of the medical equipment we were going to need for our son.  It was so overwhelming, but we were ready to start our fight against SMA.  We left Dr. Bach’s office with confidence, hope, and determination that little Angelo would be able to beat the odds.

The next day, a representative from Millennium health care came to show us how to use all of the machines we would need for Angelo.  They included a Bi-PAP (Bi-level Positive Air Pressure), a Cough Assist, and a suctioning machine.  It took her almost 3 hours to explain everything.  I felt like I should have a medical degree in order to understand her and be able to use these machines confidently.  We were told to introduce them to our son slowly, so he wasn’t startled by the sounds or the air blowing in his face.  When she left, I knew I had to be strong and confident for my son because I was the one who would be with him every minute of the day.  I had to learn how to use these machines and know what to do in an emergency.  I was scared to death!

The next morning, I called my mother to come over so she could help out.  Angelo had been a little fussy, and seemed to have some difficulties breathing and swallowing while taking his bottle.  He started to cry, which decreased his oxygen level and set the alarm off on the oximeter.  This happened a lot during the past 3 weeks, and usually he was easily consoled and would stop crying.  Today was different.  Nothing I did helped to soothe him, and I could tell that he was struggling to breathe.  He became very pale and his lips were almost white.  My mother arrived at this moment, and I told her we needed to give him CPR.  I laid him on the floor and my mother gave him a few “rescue breaths”.  My husband called for an ambulance, which arrived within minutes.  The paramedic told us that Angelo was breathing on his own and that we did everything we were supposed to do in a situation like this.  We knew that the doctors at the hospital would not be able to do anything for him, but it was protocol to bring him anyway.  The doctors increased his oxygen; something that we were just told by Dr. Bach was toxic for SMA patients.  We tried to explain this to them, but they just didn’t seem to understand enough about SMA.  We felt helpless and were happy to take him home later that day.

On Monday morning, Angelo woke up from his morning nap and began to cry. I tried to console him, but nothing seemed to work.   His machine started to beep as he struggled to breathe.  We turned the oxygen up in hopes it would help, but it did not.  He became very pale and his lips started to turn blue, which meant he was experiencing respiratory failure.  We began using the ambulatory bag, which gives “rescue breaths” and called for the paramedics.  When they came, Angelo was breathing, but seemed much worse than last time.  He was taken to the hospital again, knowing that the doctors would not know what to do.  During the ride there, Angelo went into respiratory failure for a second time.  Again, he was revived.  When we got to Bridgeport Hospital, he had a third episode and, again, was revived.  We didn’t think he was going to make it much longer, so we called our families and told them to come to the hospital immediately.  We met with Dr. Hen, the Pediatric Pulmonologist and told him about Dr. Bach and his protocol.  He told us that “Angelo’s lungs were very small and weak.  Even if we were able to get him onto the BI-PAP machine, it would only give him 2 months at the most.”  My husband and I had already discussed what we would do in a situation like this, and had to make the toughest decision ever.  We knew that we didn’t want him to suffer, and we knew that we did not want him to spend his last moments in a hospital.  We put our son’s life in God’s hands and decided to take him home.  He was still able to be on the oxygen, but there were no machines to monitor him, or to beep, or to drive us nuts.  Also, Hospice was there to help us.

Tuesday was a really good day for him, considering what he went through the day before.  He seemed very content and didn’t have any problems with his oxygen levels. Wednesday was another good day for little Angelo until he woke up from his afternoon nap.  He began to cry a little, and this time I knew there was nothing I could do, but comfort him and hold him tight.  We called one of the nurses from the Birth to Three program who had been visiting Angelo twice weekly.  She came over immediately and we had her examine his breathing.  She said that he was struggling a bit, but his heart was very strong. 

My husband called Monsignor Dora to come over to bless Angelo James one last time.  Father Skip, from St. Jude Parish, also came over to sit with us and pray.  After a few hours went by, and exhausted from everything, my husband and I took little Angelo into our bed and tried to get some sleep.  Our parents stayed the night in case we needed them.  After falling asleep for a few hours, I awoke to my son looking at me, but not knowing if he was still with us.  I woke up my husband and we could see that Angelo was still fighting.  I changed his diaper and gave him a little Pedialite.  

The next time I woke up, it was morning.  I could feel that my son was still breathing, but he was a little cold.  I told my husband and our parents that I had a strong feeling that little Angelo did not have much longer.   I sat on the bed while holding him in my arms.  We all took in every inch of his beautiful face.  He opened his eyes for a moment and looked around at everyone.  After his eyes met with mine, he closed them and took his last breathe.  Our little boy was now our little angel with God in Heaven.  We knew he was at peace and was now SMA free.

My husband and I feel extremely lucky to have had 7 weeks with our son. It's more than some parents have with their child. We would have done anything to have him with us longer, but we truly believe that God needed him more. Angelo James was sent to us for many reasons. He made us better people, taught us to love unconditionally, strengthened our bond with each other, brought our families closer, and strengthened our faith in God. Everyone has a purpose in life. We believe that Angelo's purpose is to help other children with SMA. It is now our job to fulfill that purpose through our foundation. Our memories of little Angelo will never fade and our love for him will last forever.