A touch of Heaven

Anthony and I found out we were pregnant in March of 2022 with our first child. We were ecstatic to be first time parents and like most expecting parents the planning for the future was already under way. We had finalized the date for our baby shower and planned a sex reveal party for our siblings and parents on the same day of our 20 week ultrasound. I believed it was going to be one of the most exciting days of our lives - the day we were finally going to be able to see our little one on the ultrasound and fine out the sex! Who wouldn't be excited? I didn't know anything different. Never once did it cross mind that I was having anything but a perfectly healthy baby.

It was about 10 minutes into the appointment that the ultrasound tech was having difficulty getting a picture of Natalie's head and said she needed to leave the room for a minute to call one of the doctors. My husband was panicking and I was still completely oblivious to anything. According to my husband, the technician's mannerism and facial expression showed that something was terribly wrong, but he didn't tell me that until later that day. In my mind, everything was still perfectly fine and I kept reassuring him of this. About 15 minutes had passed and she finally came back in and told us that we were going to be contacted by our doctor and someone from genetics to go over the results. I was confused as to why we would be finished when I knew the appointment was scheduled for 80 minutes and we never even found out the sex of our baby. Anthony spoke up first and asked what was going on and if there was something wrong with our child. The only thing the technician was able to tell us was that there was something wrong with our baby's skull and that someone would get in touch with us to tell us more details. Then we were walked to the exit and sent on our way.

At this point I was in complete shock and disbelief. And quite frankly neither one of us should have been driving. About 15 - 20 minutes had passed and I decided to call our OB's office to see what was happening. One of the nurses called me back and that's when our whole world came crashing in. She told me that the scan showed that Natalie's skull did not fully form and that part of her brain was exposed. This was the first time in my life that I ever heard the term anencephaly. I didn't know how to spell it. I didn't know what it was or how it happened. I didn't know why it happened or why it happened to us. We were completely lost.

We were completely devastated.

This was by far the worst day of our lives. It felt like a nightmare except that we couldn't wake up from it. The pain that I felt in my heart for my child that day was one of the most excruciating feelings I have ever experienced. It was as if someone took everything I hoped for, everything I dreamed for and for my child and just completely erased it and all that was left was a giant hole in my heart.

On our way home, we reached out to our family and canceled the reveal party that was supposed to be taking place at our house and our parents came over right away. They stayed with us most of the evening and we all just sat and cried together. No one expected this. No one prepares for something like this.

The following day, we had an appointment at Magee Hospital with one of the geneticists. I had a million questions and I didn't even know where to begin to be honest. It was at this appointment that we learned more about the diagnosis and what it meant for Natalie. It was official, our first born was not going to live. We were told that I was serving as Natalie's life support and that she wouldn't survive without me. We wanted to know whether she was in any pain or suffering of any kind. This above all else was a major concern for us. We were reassured that in most cases a baby with anencephaly does not feel pain. We were told that Natalie would most likely not respond to stimulus and that if she moved her movements would be that if post mortum, which we later discovered was far from the reality in our case and also the majority of anencephaly babies.

My husband was very upfront and honest with his questions and he wanted to know if any harm could come to me by carrying Natalie. Although there posed no greater risk than that of a natural pregnancy, we were given a medical perspective which was that it is not recommended to carry full term.

When discussing what our next step moving forward should be we were lead in the direction of medical induction. We were told that someone would contact us to go over the arrangements and to schedule an appointment with MFM. At this point I was pretty confused. If my baby was not in pain and I was not in any type of danger, then why would I need to be induced?

This was our first pregnancy. We had no idea what any of this meant in general let alone in the situation we were facing. So I had to ask the question that was eating at my conscience and that was: is medical induction another way of saying medical termination? For some people this might be a no brainer but I really had no idea . Once this was clarified, I broke down and I knew right then and there that this was not in our plan . Although my husband and I needed to talk with a few of our family Members - one of them being a doctor, our parents, and our priest to get a second opinion, he and I knew deep down that we could not agree to terminate this pregnancy.

It might have been that same day that we were called to set up an appointment for a medical induction. We were told that even if we weren't 100% sure that we should still schedule just in case because we would only be able to do so until 24 weeks. Again, I asked if this is a termination and the woman said technically yes but we call it medical induction. I declined and to be honest was pretty upset about the urgency it seemed that there was for me to schedule something I didn't fully understand.

We took a day or two to go over all the different scenarios. We reached out to our family, our priest, and our parents. My mom even talked to the priest at their church who has been really close with my family for several years. My sister in law took it upon herself to reach out to her OB who delivered her children and the MFM in their area to ask for any extra input in the situation. She wanted to know if this was procedure to medically induce or if there were other options. It came to our attention that we absolutely could carry to term and that it should have been presented as such when discussing our options. So after hours and hours of talking things through, we knew what we knew all along and that was we were going to carry to term.

Once we had told the MFM doctor and our own OB that we decided to carry to term, my sister in law told us about a site that she heard of called anencephaly.info. We are forever grateful for introducing us to this group as it has served as one of the most amazing resources for us. It helped us not only navigate through the process but also served as place of support and comfort in our grief.

It was also around this time that my mother in law gave us the name of a bereavement doula group called Pittsburgh Bereavement doulas run by Heather Bradley. It's important to stress that I had never heard of a Bereavement doula so when Heather contacted me, I had a lot to learn. But quickly I discovered that Heather was another God send in our journey not only for Anthony and I but especially for Natalie. Heather gave us insight into all of the ways we could advocate for our baby girl. She gave us materials on how we could celebrate her and most importantly she gave us hope that this journey did not have to be one filled with grief, but one that could be filled with joy. Joy just so happened to be the middle name we chose for our daughter.

Heather was there with us throughout the rest of our pregnancy and she was one of our greatest coaches and support persons on the day of Natalie's birth. She and one of her photographers who happened to be training to become a Bereavement doula are the reason for the precious photos and cherished memories that we are able to look back on today and the only memories that we will ever have of the day we spent with our beautiful Natalie Joy.

It was a little shy of a month after we were given Natalie's diagnosis that the geneticist reached back out to us to have us meet with Dr. S. During this appointment we went over some basic questions about both Anthony and I's family history. Dr S also discussed in further detail the rarity of anencephaly and how there wasn't anything in mine or Anthony's medical history that was cause for concern. Unfortunately it is a 1 in 1000 chance of happening and in most cases cannot be prevented. He did however stress that for future pregnancies that I take extra folate - about 4 mg is the recommended dose. So we were definitely relieved to hear that this was not something we caused as I am sure you all know how natural it is for any parent of a child with a neural tube defect to quickly blame themselves for the occurrence. After talking with Dr. S we were very hopeful that we were going to be in great hands with the doctors, specialists, and OB's here at Magee as well as our team of OB's at UPMC womancare associates.

Following this appointment we were set up with two of the most amazing women that we could've ever asked to have beside us throughout the rest of our pregnancy. Anthony and I went to this meeting prepared- me with a binder, notebook, and several copies of questions that we had hoped to have answered. This was by far one of the most informative and hopeful conversations we had concerning the treatment and care we would receive for the duration of our pregnancy. At one point, they referred to themselves as the "wedding planners" for the day we were to meet our little Angel. I don't think I can stress enough how much weight was lifted off of my shoulders to know we were going to be taken great care of. Much of our journey with Natalie was advocating for ourselves through several different outlets. We had been seeing various OB's which is the typical way of being cared for during a normal pregnancy in addition to seeing my mental health and adhd specialist, my therapist, Heather B, Chelsea S with core, our priest, funeral director, and Dr. B and Kate R.

Needless to say, I was overwhelmed by it all and it was my greatest hope that somehow someway we could get all of these people on the same page and that's exactly what Dr. B and Kate did.

Among the many many other things they had done for us, they guided us in the process of figuring out exactly what we wanted in our birth plan and helped coordinate our wishes for the day we would deliver — the day that would be the first and last time meeting our daughter. We couldn't have asked for more caring and supportive people to help us.

It was also through these two women that we were connected with CORE organ donation. I recently spoke at the donate for life flag raising ceremony at the hospital we delivered Natalie last month. It was during this event that I expressed how absolutely life changing this was for Anthony and I to have to opportunity to work with Chelsie and her team. Nothing could have made us more proud as parents to know that our Natalie was able to help someone somewhere down the road through the recovery of her lungs and pancreas. What better way to honor our little girl than to have her legacy live on through these gifts to medical research. When we found out we could even do something like this to honor Natalie, it brought us so much joy and healing. It made her brief life have more meaning than we could've ever dreamt of. We continue to be a part of that family and are forever grateful for the love and support we received and continue to receive from all of them.

I cannot forget the amazing help and support that we received at Magee Hospital. We worked with an exceptional woman who helped plan and coordinate our arrival and time that we spent at the hospital when we delivered Natalie. She introduced and reserved a room for my family so they could all have a place to go while coming to visit. She coordinated all of our plans and wishes of having our family be able to meet our little Natalie. We are forever grateful for all that she prepared and planned and all that she did for us.

During the course of the next several months we were able to make the most amazing memories through ultrasounds, family gatherings, a trip to the beach, and much much more. My brother and sister in law threw us and our close family members a "celebration of life" party in place of a baby shower. This meant so much to us to be able to come together with the people we love most to celebrate our baby girl's life and not her death.

We were also given a free 4D ultrasound appointment through the Pittsburgh Bereavement doulas where my mom also attended and was able to see her granddaughter alive and squiggling like the active little baby that she was. They gave us the most heart warming time with our Natalie and I mean it when I say Natalie was an extremely active baby! We left the appointment with smiles from ear to ear and our second stuffed animal with Natalie's heart beat recorded inside.

Another tradition that we created during our time with Natalie was what we called "Natty and Daddy" time. Now I have to say that this was by far our favorite time spent with Natalie. As a mother, that bond between Natalie and I was something that only other mothers can understand. It should come as no surprise that many fathers don't get that head over heal bond until the birth, and clearly we didn't have that option. Also as many of you know, the focus is placed on the mother and how she is coping and unfortunately the husband's feelings and emotions get brushed aside. But for us and especially Anthony these were the moments when we really got to know our daughter. These were the only moments we were able to have with her while she was still alive. And what is often said about babies with anencephaly that they can't hear and can't see and can't feel...

Well my husband and I can tell you first hand that that was not true for Natalie. Natalie was what I referred to as a "squiggle bum". This girl would kick back at her dad when he would tickle my tummy and poke at her. He would ask her silly questions and rub an area and man she did not hold back. There is no need to have a perfect brain to get love and to give love. These were the best memories that we have of our sweet girl while she was still very much alive and being very much loved by her parents.

And so that leaves me with the day I had looked forward to and dreaded all at the same time. The day we were to meet our baby girl and also have to say goodbye. Whether we would get to meet her alive or not we did not know. We wanted to make sure our team of support and our entire family could be there and so we made plans to be induced on the morning of November 7th. We were 39 weeks at the time of our induction and we met our Natalie after 35 hours of labor at 8:19 pm on November 8th of 2022. She weighed 4 lbs, 15 Oz and was the most beautiful baby I had ever seen. She was perfect in my eyes - all 19 and 1/4 inches of her. Perfect in every way, shape, and form. In that moment i couldn't have been more proud to have been Natalie's mother.

During the duration of our time at the hospital we met some of the most amazing nurses and ob doctors we could have possibly ever asked for. They knew exactly what our wishes were for the delivery and honored them whole heartedly. They put up with our large, loud, and quite humorous family. Most importantly, they went over and above to make us feel comfortable and cared for. I can say with utmost certainty that there was no where else I would rather have been than in the hands of the nurses, doctors and the entire staff at Magee Hospital. We were surrounded by so much love during our stay at Magee's labor and delivery unit and especially on the day of Natalie's birth. One of the nurses even got permission to stay past her shift so that she could be there to help during the delivery. We couldn't be more blessed for each and every person that was involved in this entire process.

We have absolutely no regrets when it comes to the care the people we chose to be surrounded by during the months leading up to and including the beautiful but sad day we met our daughter already in the hands of God. We spent the absolute most beautiful, life changing nine months with Natalie where she knew nothing but pure and unconditional love from her parents and family. We were blessed to have been given several wonderful hours together praying, bathing, dressing, taking photos and holding our sweet Natalie in our arms. Thanks to the staff at Magee hospital, my brothers, sister and sister in law were able to meet their niece. And most importantly, our parents got to meet and hold their granddaughter for the first and last time. We cherished this time together and have several beautiful photos that demonstrate the amount of love, joy and sorrow that filled the room that night.

We were so blessed to have such tremendous amount of support from both sets of parents and our siblings not just on this day, but throughout the entire process. I don't know how we would have survived had it been otherwise. They walked with us day in and day out no questions asked. They felt our pain and they felt our sorrow. they honored and supported our choice to carry Natalie for as long as God willed it. They celebrated our daughter's life in the womb and acknowledged that she was just as special as the rest of their grandchildren no matter how short her life was. Without the strong support of our parents and siblings, we couldn't have gotten through the lowest of lows and enjoyed the highest of highs.

Lastly, and above all else, I have to give credit to our strong Faith for getting us through it all. From the beginning and through to the end we looked to God for strength. It was He who carried us in his arms. I've said it many times and I'll say it again, I felt closer to God more than I've ever felt before while carrying Natalie in my womb. Nothing gave us more hope and joy than knowing that our daughter felt love during her entire life on this Earth and that she will continue to know that love while waiting for her parents in heaven.

It brings me so much joy to know that her life still lives on through all of you. We truly couldn't have asked for a better, more caring and supportive community to walk beside us along this difficult but inspiring journey. None of this would have been possible if it weren't for people like you here in this group.

Through our journey, we have met so many people that will forever hold a special place in our hearts. I hope that if nothing else that you walk away knowing that each of your stories and each of your children that like my Natalie were diagnosed with anencephaly have forever changed me for the better .

Lea

Last updated 02.08.2023