Author Archives: Nina Nikolova

When Life Gives you Lemons: A Personal Story from Bulgaria about Pregnancy, Birth, Loss & Family, Part 2

Nina Nikolova head shot 2

Nina Nikolova

In 2008, following the deaths of my children, I went home from the hospital feeling empty and broken-hearted. I simply wanted to close my eyes and die. I physically appeared to look pregnant and friends continued to enquire after the well being of my babies. I did not have the mental strength to deal with the reality of the situation and my husband was left to field the well-meant enquiries.

A number of months later we decided that we were strong enough to try for another pregnancy. The desire to have a family was so strong yet despite not being emotionally ready, we found the strength to embark on another pregnancy journey. Unfortunately the ICSI attempt failed and we had to face the stark reality of waiting for 12 months before we could try again (in Bulgaria families must wait 12 months between fertilization attempts).

Returning to work proved more difficult than I anticipated. While my friends and colleagues so dearly wanted to support and help me, they didn’t know how to speak with me, what questions to ask, or what I needed to help me in my grief.

It took the best part of a year to return to my former self, but I yearned to have children and life was incomplete without a family. I longed to feel happiness again and I longed to have children in my life… and so we embarked on our 4th ICSI fertilization attempt.

On one of our national Christian holidays, Blagoveshtenie, when we deliver good news to people, we discovered that our ICSI attempt had been successful. We were overcome with joy to discover that we had four fertilized eggs. Given the difficulties that we encountered with our first pregnancy, where we first implanted three embryos but took the decision to remove one to provide the remaining two a better chance of surviving, we decided to proceed with a twin pregnancy on this occasion.

I was confined to home during the pregnancy and was closely monitored by my medical team. I was required to take medication and inject daily in order to keep the pregnancy healthy. Instead of feeling the joy of carrying my babies in my womb, my days were spent crossing off days on a calendar, counting days, and praying so hard that my babies would stay safe.

During the third month I began to bleed very heavily and was hospitalized for one month, but no underlying cause was found for the bleeding. I opted to obtain the opinion of another doctor where it was discovered that I was carrying a third embryo that had died inside of my womb. The existence of this embryo was placing the well-being of my babies at risk, and the threat of infection that may lead to preterm labor was becoming a greater threat.

At six months my blood pressure began to become a concern to my medical team and I was referred to a cardiologist for treatment.

On a beautiful sunny September 9th, I visited my gynecologist for a routine checkup and was assured that the pregnancy was healthy. However less than 24 hours later at week 29 of my pregnancy, my waters broke and I knew that I would soon meet my babies. Strangely, I didn’t have any fear on this occasion; something I cannot explain. Perhaps given the pain that we had suffered in the past, I felt that my angel babies would keep us all safe.

Given the high risk nature of the pregnancy and ever rising blood pressure, the decision to deliver my babies by Caesarean Section was made by my medical team.  A little part of me still felt this overwhelming fear at what could happen and tears flowed inside for the babies I had lost. We had been on this road before and I wasn’t sure if I had the strength to come home childless again.

Baby Martin was born at 11 a.m. on September 11th weighing 1170 grams followed two minutes later by his sister Joana who weighed 930 grams. After a quick introduction to my babies they were taken away from me to be cared for by medical professionals. However in comparison to our previous experience, I felt different on this occasion; somehow I knew that the outcome would be favorable and sure enough, the experience couldn’t have been more different. I was encouraged to express milk (but there wasn’t a specific room for me to do so), I was permitted to remain in the hospital for a longer period of time in order to be with my babies, and when they were strong enough I was actively encouraged to breastfeed.

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Joana soothes herself on brother Martin’s hand

Typically in Bulgaria, families are allowed to visit the babies in the NICU only few times a week, depends on the hospital. Since the hospital was a private hospital, I was allowed daily access for one hour. Martin made good progress during his three month period in the NICU, but Joana struggled.  Four weeks after the birth, Joana’s doctor summoned us to a private meeting. With my only experience of such meetings ending in catastrophic news, I was understandably terrified. As Joana continued to struggle to progress from requiring CPAP and Oxygen support to breathe, I had convinced myself that the news about Joana would replicate that of our poor Alexandra. When the doctor disclosed that Joana had a fracture of her femur, I broke into laughter to a somewhat bemused physician. He would never understand the absolute relief that I felt that the news was not pertaining to Joana’s lung health. It was also discovered that Joana had only one kidney (not related to her prematurity). Shortly afterwards the doctors diagnosed Joana with rickets and she required Vitamin D injections intra-muscularly. As Vitamin D was not available in Bulgaria we had to order the medication from France and have it shipped to Bulgaria.

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Joana and Martin enjoy their grandfather’s Birthday celebration

It would be two months before I could hold Martin and 72 days before I could hold Joana. My babies were cared for in a very bright environment devoid of any signs of developmental care, a topic that I would only learn about many years after their birth. Kangaroo Mother Care wasn’t allowed in our unit because the doctors don’t want to accept it yet.

On the 30th of November Martin was discharged from the NICU, and Joana followed four days later. After the initial euphoria of both babies surviving their premature birth, the shock of having them home, without the support of the medical team overwhelmed us. There is no long-term follow up support in Bulgaria following discharge and after one home visit from our general practitioner, we were left to our own devices to care for our infants alone. We also were financially burdened after discharge and required to pay €4000 to the hospital to cover some of the cost of their care in the NICU.

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Nina with Joana and Martin at 6 years old

Struggling to come to terms with the way our health system cares for premature babies and their families, I, along with two parents whom I met while in the NICU, Nadya and Violeta, decided to create a foundation that would advocate for improved care and outcomes in our country. Our Premature Babies was founded in March 2012 and we are now the largest organization in Bulgaria to represent the needs of families of preterm infants. Through our international networks we have identified the short comings in our health systems, the greatest one is the lack of family centered care. We work closely with international organizations, such as the NIDCAP Federation International, in our efforts to introduce scientifically proven methods of care to the Bulgarian neonatal care system and we continue to be the voice of the newborns.

- Nina Nikolova
Chairwoman and Co-Founder of Our Premature Children Foundation, Bulgaria
Member, Parent Advisory Council, NIDCAP Federation International, Inc.
Sales Manager, Bulgarian Land Development

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When Life Gives you Lemons: A Personal Story from Bulgaria about Pregnancy, Birth, Loss & Family, Part 1

Nina Nikolova head shot 2

Nina Nikolova

It was the summer of 2008 and I spent the most wonderful vacation carrying my twin baby girls. At our 21 week antenatal check-up upon our return to Sofia the doctor flagged a “small” problem: one of the babies didn’t appear to have enough amniotic fluid and the doctor recommended frequent checkups and bedrest.

Nina pregnant with her twin girls

At week 22, I experienced some minor bleeding and went to the emergency room of the hospital. I spent two very difficult weeks on total bedrest in the hospital; resting alone in bed and praying. I had some visitors, but the only thing that was important to me was to hold my babies inside of me as long as possible.

Everything changed one day at 4pm, when I experienced a terrible internal pain and my waters broke. Instinctively I knew it, it was the beginning of the end. My husband spent the night on the floor next to my bed trying to sleep and trying to comfort me.  Intermittently he would leave my bedside and go for a walk. I often wondered why he left me, but a year later he confessed he simply had to be alone to deal with the pain of the situation and his fear that he could lose our children and me, and he didn’t want me to see his tears and heartache.  Premature birth affects not only the mother, but has a ripple effect on the entire family network, in particular those close to us. We have to remember that we are not alone in that journey and that the person next to us is there to support us.

After 22 hours of huge and unbearable pain, I delivered my baby girls at 24 weeks of pregnancy, naturally. Every step of the labor is etched in my memory: the pain, the anger, the unbearable fear of the unknown and the feeling of powerlessness.  Immediately after the delivery my two beautiful little girls were taken away from me. I didn’t have an opportunity to see them, touch their fragile bodies, tell them I loved them (and was so dreadfully sorry). It would be several hours before anyone would tell me how they were. I just lay there in my limbo state wondering if my babies had even survived.

I was transferred to my room and after I woke up, the only thing I wanted to do was go home, to start my life from the very beginning and to forget what had just happened to me and to my family. Suddenly my whole world change completely. The doctor came to my bedside and asked if I was ready to meet my babies. I was utterly shocked to discover that they had survived.

Our 5 month NICU journey unfolded… I approached the incubator with trepidation to meet my beautiful baby girls… They were so small, tiny, beautiful, and perfect. Unfortunately my second daughter passed away after two days without us having the opportunity to touch, hold, hug or kiss her.  Bulgarian law decrees than an infant that is born below 1000 grams and does not survive for 7 days is not entitled to receive a name so our beautiful little girl who had lived inside of me for 24 weeks and had blessed our lives for 2 short days was taken away from us by the hospital and burnt along with the hospital garbage.  Words cannot describe the pain of losing a child and having to be strong for the surviving twin. My heart was broken for my loss, but I cried my tears at home before putting on my strong supportive face for our daughter.

I waited with bated breath for day 7 to arrive so we could finally name our daughter Alexandra. I was lucky to deliver my babies in one of the most modern hospitals in Bulgaria, so we were permitted to visit Alexandra every day. Our visitation was limited to one hour and only one visitor was permitted at a time.  After the birth of our girls I was given pills by the doctors to stop my milk and it was so distressing to see the other mothers in the unit breastfeeding when I had been denied the option.

I found myself immersed in a world that I knew nothing about; I had never heard the word premature birth let alone know anything about the risks and consequences.

The NICU is a strange place; noisy, full of fear, lined with incubators, strange machines and equipment, babies with tubes and lines coming from every inch of their little bodies and staff that scared you. It was extremely difficult to obtain reliable information about preterm birth, but I did manage to find an online site and started to inform myself.

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Alexandra held by her father

Alexandra’s respiratory status continued to worry her doctors and after many investigations on her lungs it was discovered that she was suffering from Bronchopulmonary dysplasia.  Her lungs were not developing and despite the initial elation that the lungs would recover the outlook soon turned bleak – she would require oxygen to stay alive. We were summoned to the head doctor’s office to be told that the doctors had done all they could for Alexandra and they could do no more for her.

We set about contacting hospitals in Germany, Canada, Israel and Australia in the hope that someone might be able to offer Alexandra some hope. However all the replies reflected what the Bulgarian doctors had told us until we received some hope from a hospital in Israel. Following a conference call and a transfer of 70,000 USD (an enormous amount of money for us given the average monthly Bulgarian salary in 2008 was €300), we prepared to transfer Alexandra to Israel for treatment.

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Alexandra at four months old

Unfortunately, there was no dedicated neonatal transport service available in Bulgaria to transfer Alexandra, so we had to privately fund the transfer ourselves (€20000). Transporting an intubated infant is difficult even with the best of medical support and we were faced with the prospect of having to source a transport incubator ourselves.  Making that journey to the airport with just Alexandra, the doctor, and the driver was a terrifying experience. My mind was in turmoil, my heart was breaking with the pain and fear that we might lose Alexandra and I had no-one to share my burden. Initially the doctor refused to transport Alexandra because she was intubated, so they tried for 30 minutes to extubate her and they hoped to keep her alive with an ambu bag for the flight, but regrettably it was not possible and on that freezing cold night in February the plane left without us. I was crying so hard the only thing that would have eased my pain was death. On Tuesday February 172008 Alexandra returned to the hospital a very, very unwell baby.

Fortunately the Israeli hospital refunded the money we had paid them, but we lost the 20,000 euro –none of that mattered.

On Friday, the 20th of February we were summoned to the hospital by Alexandra’s medical team; we knew the news wasn’t good and this was the beginning of the end for our little girl. The doctor felt that she only had a few hours of life left in her tiny body that had fought so hard these past few months. My husband fainted to the floor when he entered Alexandra’s room.  I entered and approached the incubator. She was staring at me, with an empty look, her breathing labored; saturation 80/40. I put my palm to the very cold incubator, I didn’t want to cry, I was to be strong for her, for my little hero. I told her that she can go.  I left the room, I left her and I left the hospital.

At 5 pm we received the phone call that no parent ever wants to receive…Alexandra had passed away…a part of me died that day. The only clothes I had been brave enough to purchase for her, which were intended to be her discharge home clothes, ended up being her burial garments.

We cremated her and put her ashes in a tomb next to her grandfather. She will always be my little fighter, my angel, and my little daughter.

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Alexandra listens to her mother singing

I had the best time with her for 5 months, singing to her, hugging her and loving her with all my heart.

Alexandra smiles at her parents

It is not easy to lose a child, but we have to be strong and happy to have the little time together. She made me believe that everything is possible, that everybody has his own way and time to Earth and we have to spent this time as much as we can and remember the good things and the happy moments.

NIDCAP did not exist in Bulgaria in 2008 and it still doesn’t today in 2016. I am just setting out on my journey to learn more about the NIDCAP care philosophy and am hopeful to one day ensure that all the babies cared for in our nurseries get this gold standard of care.

 

 

– Nina Nikolova
Chairwoman and Co-Founder of Our Premature Children Foundation, Bulgaria
Member, Parent Advisory Council, NIDCAP Federation International, Inc.
Sales Manager, Bulgarian Land Development

Note: In Part 2, Nina Nikolova will share stories of the birth of her now five year old twins (born at 29 weeks gestational age), and how the “Our Premature Children Foundation” began, as well as how she became involved in the NFI’s Parent Advisory Council.

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