Pareto theorized the “5 why” philosophy, which states for any cause you come across if you ask and answer “why” 5 times you’ll get to the root cause of the problem. “Why” is a question that plagued my wife from the 20 week scan to our child’s delivery. At the 20 week scan we were informed that our child had multiple abnormalities. He was tested for three stages of chromosomal disorders but his tests always came back normal. Perplexed, the doctors were wondering why they were seeing these abnormalities. We continually asked how severe the abnormalities were. The answer was the same across every doctor we faced. “I don’t know, I won’t know until he is born,” they told us. We were in a state of confusion. Our lifestyle is/was not one that is conducive for breeding issues. The question still lingered, “why.”

 

 

Fast forward through time and our son was born to my surprise with the issues the doctors mentioned and many more. My wife and I decided to go through genetic testing hoping we would find an answer. Our son was a case that none of the doctors had ever seen anything like before. After the genetic testing we found our answer. It was a defective gene passed on to our son through my wife. We didn’t know exactly how it happened but we knew that her mother had gone through a similar situation with a son 30 years prior to our son being born.

In our city, we have a growing problem with infant mortality. The question is “why.” I am aware that genetic testing 30 years ago wasn’t as far along as it is now. But hypothetically speaking, let’s say it was. If my wife’s mother had known the reason behind her son dying and if it were a genetic defect she probably would have shared that information with my wife. If that had happened, we may have found other means to get pregnant. That’s one life saved and a decrease in infant mortality. Now multiply that across all the mothers and fathers who could have used other means to get pregnant. Now the infant mortality rate has drastically decreased. Genetic testing today is more advanced than it was years ago and it is more available. So don’t be scared of genetic testing and do not be ashamed to speak with your children about it.

By: Christopher Jones, Sr.

After our son passed away, I remember looking at myself in the mirror one day, speaking out loud and saying, “All I wanted was for our son to live.” And then I let out a long, deep sigh.  And when the tears started to well up in my eyes, a still, quiet voice responded to me and said, “Look at how he’s helping other people…through the milk he made, through the way his story is blessing other people, through the donations that people are giving in his memory. He’s still alive.” I looked back in the mirror, nodded and slightly smiled.

Walking the journey of infant and child death is never easy. And as a parent I’ve learned that no matter what-I’m always going to want my child in the flesh. Here on earth with me. In his room. In his bed. And in my arms. But since he lives in Heaven, which is a better place for him that this earth would ever would’ve been, I’ve come to find comfort in the other ways that he lives.

When we realized that our little guy’s short life was coming to an end, we knew that we wanted it to have meant something. We needed our pregnancy experience and his life to have not been in vain. So, we immediately started thinking of ways that we could turn the most negative situation in our lives into something positive for others. The first thing we thought of was to donate his organs to our local LifeCenter organ donor network. Our son was born at 36 weeks and 2 days, which is just about full-term, but since he didn’t make it to 37 weeks in utero, he was still considered premature. Plus, with all of the congenital abnormalities, we were told we wouldn’t be able to donate his organs to other living people who needed them. But, we knew that if we donated his organs to research that countless people would be helped for years to come through the work that scientists would do on them. They would be able to discover why his body and organs grew the way that they did and they would be able to track their findings and turn that infomation into articles, which would be published in medical journals and ultimately, help teach doctors and medical students all around the world about babies who were born with some of the same issues.

We’d spent approximately 12 hours a day at the medical center every day with our son. And when it was time for us to go home to get rest we were OK with doing so because we could login to a system and watch our little guy on a camera called the “NICVIEW.” The NICVIEW camera made it so that parents and loved ones can get online at any time of the day or night and watch their child. The NICVIEW cameras gave us an opportunity to go home and get some rest and if  I wanted to sneak a peak of our little boy in the middle of the night I could do it virtually. During all of that time in the NICU we also saw that there was a lot that went into making sure that place ran smoothly! Between the nurses, doctors, support staff, all of the medical equipment and child life equipment and everything else–it was a top-notch operation! We also saw families who appreciated being able to step away for a few minutes to get some food from the large cafeteria downstairs or being able to leave the hospital and visit one of the many restaurants near the hospital. We decided to set up a way for people to donate money back into the NICU in Junior’s honor. The money that was donated would be used to help fund all of the items mentioned above plus whatever else was needed in the NICU that would help families during their time there.

 

I’d learned about milk donation through my years of working at the hospital and decided that if my baby wasn’t going to get my milk some baby should. Heck, that stuff was liquid gold. And I was producing a lot of it…every day and all day. So we donated all of my milk to the Mother’s Milk Bank of Ohio, which serves seven different NICUs across three different states. My little guy never got any of it–but some other blessed babies got the nutritious and delicious milk that came as a result of me being pregnant with Junior!

 

We started the Angel Baby Network to help bring parents like us together. And we got involved in the work of Cradle Cincinnati, a group dedicated to reducing infant mortality in Hamilton County. We also spoke with people from the Fetal Infant Mortality Reduction program to tell them about ways that the local hospitals can be more sensitive to parents’ needs when they loose their infants.

Don’t fall into the belief system that because your child’s life ended that his or her memory can’t be kept alive. There are so many ways that your little one’s life can still touch others and no matter what–he or she had a great purpose. Just like any other parent or loving family member who is in a child’s life, it’s up to you to develop and cultivate that purpose.

Here are some ways to keep your little person’s life “alive.” (The examples that I gave above are in the list below with some other suggestions.)

-Start an organization that will help others. Figure out what your mission and vision are and go forth with it.

-Donate his or her organs to the local organ donation center. Or donate his or her organs to research.

-If possible, consent to have him or her in medical studies. Those studies could help other families in the future.

-Donate your milk to your local or regional milk bank. *Don’t sell your milk online. This is a very dangerous practice. Certified milk banks pasturize your milk and make it safe for other babies to drink.

-Set up a fund for loved ones to donate to a cause that is special to you or an organization that helped your family when your child passed away.

-Do random acts of kindness in honor of your child.

-Plant a tree in his or her honor.

-Get a tattoo or a piece of remembrance jewelry in his or her honor.

-Donate some of his or her items to an organization or another family who you know could use them.

-Blog about your experience online or submit an editorial to a magazine or newspaper. Or write your story in a chapter of a book. You never know who is reading your story and who will be encouraged by it.

-Buy toys or gifts for an orphanage or another agency and donate them in honor of your child.

-Donate money to a funeral home and ask that it only be given to families who lose their babies or children. *Trust me–having to come up with money to cremate bury a child is the last thing any parent wants to think about after their child has passed away.

-Fundraise for a room or a space or a piece of equipment at a location that is special to you and your family in honor of your child.

-If your child passes away from a specific illness, participate in an event in honor of your child that raises awareness about that illness.

-Participate in a support group or activity and share your story.

–Speak your child’s name.  He or she made you a parent and no one can ever take that from you.

By: Danielle Jones

It makes me cringe when I hear future parents say this common phrase, “I hope my baby is cute with good hair!”  I’m sure at one point in my life I was either thinking ,or saying the same thing.  I had no clue what I should be praying or hoping for.  Well lets just say my understanding of what really is important with child-birth totally changed on April 11, 2011.  On that day I opened the book of many life lessons such as life is not fair, tragedies will happen to everyone, and the birthing process is not as easy as some people make it out to be.  On 4/11/2011, our baby boy was born without a heartbeat.

At that moment in time, life had literally stopped for me, my heart stopped beating.  I felt trapped inside a dark tunnel with no way to escape.  Life had hit us, and boy did it hit us hard.  Early that morning when I began to have those dreadful contractions, I began to envision what was soon to come.  I saw myself pushing, while screaming at my husband as he did his best to encourage me to get this big baby boy out!  Next I saw myself holding our first born son and kissing his cheeks until they became raw, as my husband watched with a wide grin on his face because he had witnessed the birth of his firstborn son.

Unfortunately, the opposite happened for us.  Till this day, I remember the doctor who came in and said the words I will never forget, “we cannot detect a heartbeat.”  What do you mean you can’t hear his heartbeat???!!!!!!  I had no complications, I was almost 41 weeks, and I never missed any of my check ups.  Everything was fine!  My reality became ill to my stomach.  Why me God???!!!!  Really?  Why couldn’t you pick out another test for us to endure, why this????  I’m not as strong as you think. Lesson learn was that life does not discriminate when it comes to experiencing tragedies and loss.

So when I hear parents talk about the desires of their first child, I quickly chime in and say, “Just pray for a healthy baby with a heartbeat.”  Life is more valuable than anything in this world.

By: Clarissa Doggett
Clarissa is a wife and a mom to three beautiful boys, Roman Thomas, who lives in Heaven and Aiden and Titan. She is also the co-founder of the Angel Baby Network. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

*Warning….this post contains a couple of bad words. If you have never endured the passing away of your child you shouldn’t have anything to say about those words. But–if you are a parent who has lost a child you will be able to identify.*

I had once heard that there is nothing like losing a child. And until it happened to me, I couldn’t fully comprehend the idea. I didn’t understand how or why there was “nothing like losing a child” but based off of what I’d heard, I knew that it was something I never wanted to go through. I also didn’t think it was something I’d ever know how to live through.

And then it happened to me.

On Friday, July 31, at 7:23 pm, in one of the NICU private rooms–room B7 to be exact–with our baby boy in my arms, his daddy/my husband looking over my shoulder and crying and tears flowing down my face, I learned that there is nothing like losing a child. *God, please don’t let there be anything worse than losing a child.*

There is no hurt so deep, no pain so devastating, no circumstance so terrible that compares to it. I’m talking past your surface, through your flesh, into your muscles, on into your bones and beyond into your marrow…hurt. Your feelings’ feelings hurt and there is no one or nothing that is able to console you enough. 

And when that pain doesn’t fully manifest, there are times when you will be numb. Shell shocked. Frozen in your state of mind, body and the depths of your psychosocial soul over whatever the hell just happened-because you and everyone around you is still trying to make sense of it-when it simply doesn’t make sense.

It is a shitty situation. It is a fucked up situation. It is a situation that will leave you asking God and people a million questions that no one will have the answer to. The most frequent and elusive question of them all will be, “WHY?”  Especially when you did nothing to cause your child’s death.

Some days you will be fine. And other days you will be a complete and total wreck because you will face the reality that your child isn’t here on earth with you. Some days you will experience a trigger that will cause you face the fact that your child has passed away. But until it happens you won’t know that thing, person, place, smell or sound was a trigger and the tears will unexpectedly fall. 

For example-as a little girl I rode the school bus every day. Normally, there is no fear in riding the school bus or driving behind a school bus. But now I know that if I leave for work at 8:32 in the morning that I am going to be behind a school bus that makes three stops to pick up children before it makes a turn and is out of my sight. And if I am thinking about my child at 8:32 in the morning and I am behind the school bus as it makes those three stops I may blink a few times and find tears rolling down my face. It’s because at that moment I realize that my baby isn’t on that school bus and the harsh truth is he isn’t ever going to ride on a school bus.  And that hurts. 

 

The raw truth about infant and child loss is that while people mean well, sometimes they say really, really stupid things and you have to look at them, breathe deeply, roll your eyes, shake your head and forgive them. You will have to be the bigger person and understand that they didn’t know what else to say. And on that day, that person or those people forgot that a hug and a “I’m praying for you” would’ve  gone a lot farther than a cliche phrase. You will have to take several deep breaths and sometimes explain to them that time doesn’t heal all wounds, that none of your other children will replace the one that passed away and that just because you’re young–it doesn’t necessarily mean that you are ready to get pregnant right away after your child has died.  

The raw truth about infant and child loss is that as a parent whose infant or child has passed away, you will have bittersweet moments when your friends will tell you that they are pregnant and while you are so happy and elated for them that you will be sad because it isn’t you. You may get sad at your friends’ children graduating if your child was supposed to graduate at the same time. Or you may have to explain that you don’t want an invite to their child’s birthday party because it is is too painful for you to attend, while you know in the back of your head that your child should be celebrating a birthday at the same time. 

As a parent you will long for the everyday things that other parents take for granted. The goodbye kiss that they receive from their child as they drop them off at a sleepover at a friend’s house. Staying up late with their child to help them with homework or a science fair. Hearing the pitter patter of feet run through the house during the wee hours of a Saturday morning. The noise of giggling late at night when their child is supposed to be asleep. The phone call that their child makes to them or vice versa just to say hello. Even their child asking 100 annoying questions or begging for money are all things that you will desire just one more time that other parents take for granted. 

But I also have to come to know that as a parent whose child now lives in Heaven, that the truth about infant and child loss is that it can give you a completely different perspective on life…if you let it. You will come to realize that you possess a strength that allows you to get through life’s most tumultuous of times . You will wake up in the morning, put on your imaginary super hero cape and make it one more day, which turns into tomorrow and the day after that.

If you let it, infant and child loss can lead you to love more deeply. It will cause you to forget about things that aren’t really important. It will remind you of what really matters. It will challenge you to truly live in the moment because as a parent who has lost an infant or a child, you know all too well that the next moment isn’t promised.

The raw truth about infant and child loss is that it sucks. It hurts….a lot. But it will connect you to what I like to call the sorority and fraternity that no one wants to be a part of. You will feel an instant connection to others who have walked a similar walk as you. You will meet and befriend some of the most amazing people who are just like you, who have experienced infant and child death and who will hug you when you need it, check on you when you feel like you are falling apart and will be silent as they sit with you while you cry on those very hard days. 

As you endure infant and child loss at times you will truly begin to understand that as you walk this road, Philippians 4:7 will leap off of the pages of the Bible and become true. “And the peace of God which surpasses ALL understanding will keep your hearts and minds in Christ Jesus.” You will come to know a peace that you didn’t even know you could experience. 

Infant and child loss isn’t easy…but if you make the commitment to getting up one more day and to continue living on this earth with your child living in Heaven-but always in your heart-it is doable. Hang in there. You are stronger than you know. 

By: Danielle Jones

 

 

 

In December of 2014, Chris and I found out we were going to be first-time parents! This was much to our surprise–especially since we practically got pregnant while I was on birth control! When I went to go confirm the pregnancy (after taking two at home pregnancy tests), the doctor looked at me and said this had to have been God’s divine plan. She knew that Chris and I had been through an array of other life issues in the months leading up to the pregnancy.

 

In June of 2014, my grandfather had passed away unexpectedly. In September of 2014, I went through a series of tests which determined I had fibroadanemos (small benign tumors) growing in my right breast as well as a lesion growing in one of my milk ducts that the doctors said put me at an increased risk for developing breast cancer. (Not to mention in November 2013 the doctors found fibroadenomas in my left breast-which are now dissolved.) In October of 2014 I had that lesion surgically removed. A few days after my surgery, my family’s dog died. And in the second week of November (and unknowingly to us-the day after we conceived) Chris miraculously survived a car accident where our SUV had turned over on the highway. So–yep–the doctor knew about all of the chaos we’d experienced and she was believing that the baby growing inside of me was truly a blessing sent to us from up above.

Over the next several weeks, Chris and I adjusted to the idea that we’d have a new little person running around our house. Chris was so excited and knew from the start that we were having a little boy. He didn’t have a way to prove it but he could feel it. His life’s dream was to have a son and he knew in his heart that that was what was going to happen. As for me–I wasn’t sure what we were having but I knew I wanted a healthy baby. I figured I could roll as a football mom or a Girl Scout troop leader. It didn’t matter to me. I was just eagerly looking forward to the day when we’d have a mini-me or a mini-him looking at us calling us “Mommy and Daddy.”

At 20 weeks and 6 days gestation, Good Friday 2015, we learned that we would be having a little boy, just as his daddy knew all along. That was also the day when we found out our son would be born with a variety of medical issues.

As Chris and I watched the Sonogram Tech roll the device over my stomach we “ooh-ed” and “ahh-ed” over seeing our little boy move inside of me. But when the doctor came out to confirm what the Sonogram Tech saw, her face was void of blood and color and she looked like she’d just seen a ghost. She told us that our little boy had multiple abnormalities and she was very concerned about us. She told us that most parents who saw the types of issues in their children that she saw in ours usually decided to terminate their pregnancy. We told her that wasn’t an option for us and to tell us what she saw. Her list was long. Extremely long. Long enough for us to sit and stare at her and ask her if she was kidding because it didn’t seem real. She said unfortunately she wasn’t kidding and that from that moment on our pregnancy would be considered high risk. She suggested that I get an amniocentesis that day so the doctors could start running tests on the baby and on me. After she told us this, she said she’d give us a minute to talk while she went to go get the utensils to perform the procedure. Chris and I held hands and we prayed. We prayed that God would protect our child, that He would protect us and that He would prove the doctors wrong.

After we prayed together I left the room and went and locked myself in a patient bathroom and got on my hands and knees and with tears running down my face and with me silently crying out to God with everything I had in me, I begged Him to save my child. I prayed harder than I had ever prayed before and when I got off of the ground I saw my tears on the gray tiles and the black caulk in between them. I didn’t know what to do but I knew I could pray and believe for our baby.

When I and the doctor came back into the room, she performed the amniocentesis on me and told me to go home and rest for the day. She then referred us to the high-risk clinic for the practice and that’s where our journey began.

After several weeks of me receiving care from the doctors at the high-risk maternal fetal medicine clinic and the baby being closely monitored and having a couple of MRI’s on his own–in utero through services at the Fetal Care Center of Cincinnati, it was determined that our little guy had a lot going on in his little body. Way more than Chris and I were prepared for. He had fluid around his brain, he was missing the coordination center of his brain (the vermis), his eyes were deep set, his ears were low, he didn’t have much of a chin, his airway was very, very small, a part of his bowel was growing into his umbilical cord, his legs were bowed and his wrists were clubbed. His brain stem also showed some severe issues. His pituitary and thyroid glands were extremely small–meaning he would not grow and develop normally and he wouldn’t have a fight or flight response…meaning a simple common cold or a jolt of regular excitement could possibly kill him. Though the doctors knew that these issues were severe, no one knew just how severe they would prove to be and our case would be on a “wait and see” basis until the baby was born.

All of our doctors and the doctors who would be caring for our son after he was born painted a grim picture. But we wouldn’t accept it. We would not internalize it. We could not bring ourselves to believe that our child–this divine little boy who was truly an unexpected gift to us, this child–who had come to us after we had just walked through so many other terrible things, this child–who was his daddy’s only dream in life and my answered prayer of being a mommy–would possibly die right after he was born. We could deal with being the parents of a special needs child. That didn’t matter to us. We knew that we would love our baby no matter what malformation or disability. We were unconditional lovers–especially when it came to our future child. But we could not wrap our minds around us giving birth to a child who would die.

Because of the medical issues, our doctors recommended that we deliver the baby at 37 weeks, instead of the regular 40 weeks. We were prepared to do that—but God had other plans. On July 21, at 36 weeks and 2 days, our precious baby Christopher Louis Jones Jr., affectionately called “Junior,” was born. He came into the world blue and not breathing. After resuscitation and having a breathing tube inserted in him, he was immediately transferred to Cincinnati Children’s Hospital Medical Center’s Newborn Intensive Care Unit (NICU).

Because of our son’s head size due to the fluid being around his brain and his enlarged ventricles, I had to have a classical cut (T-cut on my uterus) and a bikini cut C-Section. So, while our son lived in the hospital for 10 days, I stayed in the hospital where I gave birth for four and a half, recovering. Which meant my husband and family members were responsible for getting me back and forth from the hospital I was a patient at–to the hospital where our son was a patient. Every time the over the next 10 days, after multiple tests, exams and doctor consultations, it was determined that everything that the doctors saw in prior sonograms and MRI’s would prove to be true. In addition to everything else that the doctors already saw, it was determined that our little boy didn’t have adrenal glands, the glands that regulate every organ, every tissue and every organ in a person’s body. And his brain stem–the part of a person’s brain that controls their breathing, their heart beating, them swallowing and pretty much living without them realizing that that’s what they’re doing, was severely and abnormally underdeveloped.

We met with doctors several times every day in the hospital and in the words of Chris, we saw every division at the hospital that ended in “ology.” Endocrinology, cardiology, neurology, neonatology, pulmonolgy, and several others. Chris made the nurses and doctors laugh and he was a trooper. Every time the doctors said something else was wrong with our son, he would go home and record his voice speaking words of life and encouragement to our son and he would put those words on a CD. So every time anyone entered our room, the first thing they heard was Chris’ voice softly but booming through the CD player that sat on the ledge right next to our baby’s head…”You are healthy in the Name of Jesus. Your heartbeat is regulated. You are the righteousness of God. You are loved.”

 

Finally on day number nine of Junior’s life, the doctors told us that we had some very hard decisions to make about the future of our child’s health. They shared with us that in order for him to live, he would need to be connected to a ventilator, a feeding tube and a suction machine for the rest of his life. The doctors also made it clear that, even if he were connected to these machines, he could still die.  were surprised that he had lived beyond 36 hours.

Based off of this information, we knew that his quality of life would be poor. After carefully considering our options, we decided it was in our son’s best interest to remove the ventilator and let him go peacefully to live with Jesus. On Friday, July 31, at 7 pm, with our permission, the doctors carefully placed our son in my arms and took his breathing tube out as he peacefully passed away. We knew that heaven was a better place for him, as there are no ventilators, tubes, machines, X-rays or needle pricks there. And the crawl space is infinite for a little boy who is on the move!

In the short time since our son passed away we donated his brain, brain stem, heart and part of his lungs to research. I donated all of my breast milk to the Mothers Milk Bank of Ohio, which serves seven different NICUs across three states. People can make a donation in our baby’s memory to the Cincinnati Children’s NICU; donations will help the families of NICU babies as well as the babies themselves. We also started the Angel Baby Network, a support organization that helps families as they walk through the passing of their child. We have met with the Cincinnati Health Department Fetal and Infant Mortality Review program to help them improve the care that is provided to families across the region when they have babies. And we work with Cradle Cincinnati, which focuses on reducing infant mortality in Hamilton County.  We do not believe that this is all God has in store for us.

We learned that our little boy passed away from a genetic defect that we didn’t know anything about. The defect is so rare that only a handful of other children in the world–about three or four–have ever been studied as having it. With this knowledge, we will be able to make decisions about the future of our family. And since we were told to wait 12-18 months after we had our son to get pregnant again (due to my C-section cuts) we’ll keep on helping a lot of other people until it’s time for us to have another child…and even beyond then.

If we had a choice between our son dying and helping a lot of other people or us being able to bring him home, we would have chosen the latter. But God has us in our situation for a reason. We may not completely understand it, but we will make sure that we make the best of what happened and that our son’s purpose of helping others is fulfilled. We will always love our little boy, and he will always be our champion.