From a Mother’s Heart
As a 35-year old mother of three who has I’ve experienced both a normal pregnancy and one with many complications, I feel I’m a prime example of the phrase that no two pregnancies are alike. My daughter Katie, who is now 2 ½ was born at 41 ½ weeks via c-section because she did not want to come “naturally” even after I was induced. My pregnancy with my twin boys Colin and Jacob (a.k.a Jakey) on the other hand was anything but normal. From the moment my husband and I learned that we were having identical twins boys who were Monochorionic/Diamniotic (meaning they share the same placenta but have separate amniotic sacs) we were informed of the potential for complications, albeit rare, due to Twin to Twin Transfusion Syndrome (TTTS).
While we were told about TTTS, we were also told it was uncommon and unlikely to occur, so we didn’t think too much about it. For some background, TTTS occurs only in identical pregnancies and is when the babies share blood vessels resulting in one twin having more amniotic fluid than the other. Twins who are diagnosed with TTTS rarely go full term and are almost always delivered prematurely. During a routine ultrasound at 16 weeks, one of my Maternal Fetal Medicine (MFM) doctors diagnosed the twins with TTTS. In addition to the TTTS, we also were faced with Jakey being growth restricted as he had a significantly smaller portion of the placenta. It’s amazing how quickly you learn about these different types of conditions when you’re faced with them personally.
Everything that could have been done for the twins was done. I was sent to specialists and they performed a laser ablation surgery which gave the twins more time to grow. My entire pregnancy was literally spent either at doctor’s offices 4 times a week or at home where I sat and rested. It got to the point where everyone at the doctor’s offices knew me personally and I had my own sonographers and gynecologists that worked specifically with me. I was blessed to have them.
There was a time at 24 weeks when I had to have a talk with NICU team to discuss the possibility of delivering the twins before 30 weeks. We thought that we were going to have to deliver the boys that day because they saw reversal of blood flow in both of the boy’s umbilical cords. I always knew that the possibility of delivering early was high, never did I think that my husband and I would need to decide at that moment what to do.
Our boys up until the very end were my “wait and see” twins. Waiting and seeing always benefited us. When the boys were in utero, they were very much like me, “let’s wait and see, we will let you know when we need to come out.” My gut told me to go with it, I talked to my Maternal Fetal Medicine Doctors, consulted NICU and based on what they could see there was no harm in waiting to deliver the boys. However, the stress of waiting and knowing that if I feel the smallest thing different, I needed to call and let someone know weighed heavily on me, but it was better than having the twins fighting alone. It was better for the 3 of us if I was fighting alongside with them.
About a week before I was scheduled to deliver at 32 weeks I had my final checkup by Maternal Fetal Medicine and NICU. NICU went as well as I could have imagined. The doctor who met with me was with me since the middle of my journey with the boys. She knew I understood the challenges that we were facing, and we both knew it was no longer about me when the time came, it was about the boys. She said that she would need to give me magnesium to help protect the boys brain during delivery. We both said in our own way that it wasn’t about me, it’s about the boys. She answered all of my questions, even the ones that weren’t so important like, can my 15-year-old cousin come and visit the boys in NICU? The answer was no, but I understood why. I always had in the back of my head that even though I wanted my family to meet the boys, our miracles, that other families had their own miracles in the NICU and that it wasn’t about me. I had to think about other people each and every time I stepped into the NICU. I kept on thinking not only about my boys but other people’s babies that fought so hard to get here. Would it be fair to those kids if I came in feeling under the weather and exposed them to something when they came out of their isolate? We received the good to go from Maternal Fetal Medicine and NICU.
The next time I was scheduled to be be back in the hospital was for when my C-Section to deliver. Well, I sensed something wasn’t right the very next morning and texted my doctor. I was going into the hospital anyways because I was receiving my final steroid shot to help the boys grow, because they were going to be delivered at 32 weeks. It was day 31.1, and little did I know what I felt was what I had been waiting for these past few months.
I received my shot and almost immediately after, I think the receptionist noticed I was on edge told the sonographer she needed to take me ASAP. This is how well your office staff gets to know you when you are there practically 4 days a week. Within 5 minutes of being scanned I was in the OR. Within 10 minutes I was prepped, my anesthesiologist told everyone to stop talking and I was going under in 5, 4, the iodine splashed on me 3, 2 and I was out.
My amazing Doctor. Dr. M who has been with me since the beginning delivered the twins within the same minute because she needed to get them out. I thank God every day that I was knocked out. I secretly wanted to be knocked out when they were to be delivered. I would be able to be awake knowing that something was happening to my boys and I wasn’t able to do anything about it. I always knew it would be better for me to wake up and know what happened instead of living in the moment what was happening. When I woke up Dr. M, Dr. H, Dr. S (NICU) were all there next to me telling me I did a great job. Dr. H told me that I saved the boys lives that day. Which I will never take credit for, it was always a team effort.
Fast forward to the weeks ahead. Colin (Baby A) was doing great, in fact they thought he would be able to come home within a month. which did indeed happen. He was the bossiest of the twins. He always knew what he wanted, when he wanted it, and if he didn’t get it right away everyone in the NICU would know about it. Same goes to present day. The boy knows what he wants.
Jakey (Baby B) on the other hand was much more delicate than his brother. Jakey was the reason that him and his brother made it. Not only did he keep them alive in utero, but he let me know that he was in distress. Jakey was my old soul. He looked very much like baby Yoda. He had the blondest hair you would swear it was white, and he was very wrinkly. When I first saw him in NICU the nurse later on told me I almost got her chocked up because when I saw him, I lost it. He was my “we don’t know”. I was ok with not being able to touch him I was ok with having to follow the rules of the NICU. I wasn’t going to fight anyone, because I was done fighting. My job now was to rest and recover and come and visit my boys as often as I possibly could, which I did. I did daily Kangaroo care, talked/read to them, fed them (when we could), and learned how to change them.
My boys were born at the beginning of COVID-19 pandemic so the rules were constantly changing as the pandemic got worse and we learned more about it. We were still trying to understand what it was and the impact it had not only on adults, but on children, and newborns. Because of how bad it was getting visitors of the NICU were no longer allowed other than parents. Which I was relieved about. Yes, it meant that my parents couldn’t go and see the boys, but the boys and I fought hard for them to get here. I would be so upset if someone asymptomatic came into the NICU and exposed my boys to the virus. As it was my husband had a cold when the boys were born. I, I meaning me only allowed him to see the boys once he felt 100% better. If not for our boys but for other people’s kids.
I was always afraid of the NICU, but NICU soon became my second family. Colin and Jakey’s nurses became a part of my family. So much so that Jakey’s primary nurse is his Godmother. NICU is there to support you. Ask questions, no matter how small or big they are. My husband and I were told that the NICU can be a bit of a roller coaster ride and that preemies can be unpredictable. Jakey needed a blood transfusion within the first week to help him with his oxygen levels. I told the doctor doing rounds that I wanted to give him my blood because we were a match. The doctor doing rounds who was a resident said she would look into it, but my main go to nurse told me very nicely that I wouldn’t be able to because I just had major surgery. That broke me, the nurse saw that it broke me, but even though she didn’t have Jakey that day she had someone cover her baby and she stayed with me as I cried. She answered my questions, she was there to comfort me. She became my person.
NICU is everything that you want to take out of it. Dan and I learned so much. We invested our time in the NICU even though we had our little girl at home. It was important for us to learn how to take care of our boys and have an active part in the caring of them. It wasn’t just us going there 30 minutes a day Kangarooing and leaving, we would spend hours there each day learning the daily care that they need, what the alarms meant and knowing when it was a routine alarm or one that was more serious. Get to know your baby, ask questions, respect the doctors and nurses when they say you can’t do something. Yes, it’s hard, it’s a hard pill to swallow but know and trust that they are doing it because it is what is best for your baby. I can’t tell you how many days I just sat in-between my boys and would just look at them because they had had a restless night, or just needed to be still during the time I was visiting. I was fine with that. It was all about them and what they needed. Believe in yourself, believe in your child/children, believe in your doctors, nurses. There is no such thing as a stupid question. If you don’t ask a question, you won’t know the answer. Take your time, do home, process, write questions down if you need to. Most importantly even if it scares you, hold your child. My babies were the smallest babies that I had ever seen before. They looked so fragile, but I had so much support from the NICU team that I held them, both, together, at the same time. One of the best memories that I will cherish for the rest of my life.
Children should come first, always!
By Dr. Ola Didrik Saugstad
In 2008 I participated at a conference in the UN headquarters in New York entitled “Women and Children first”. The focus of the conference was on how to reduce global maternal and neonatal deaths. In many ways, the seed for this conference was sown on 26th of February 1852 when the HMS Birkenhead” under the command of Captain Robert Salmond hit a rock 3 miles from the coast of South Africa. That night, the great naval tradition of “women and children first” was established as eventually the only functioning lifeboats, two cutters, and a gig, were launched and the seven women and thirteen children were rowed away from the wreck to safety. Of the 634 people on board the Birkenhead, unfortunately, only 193 could be saved.
Some years later, I lectured in Riyadh, Saudi Arabia, about global newborn health. I referred to the UN conference, showing a picture of myself at the UN lectern and also talked about Birkenhead. I asked the audience rhetorically: What do you think would be my top priority if I could rule the world for one day? My answer would be to “eradicate avoidable women and child mortality now.” Interestingly, from the back of the audience, where the participating women were seated, I heard a whisper: “Women and children first.” Tears filled my eyes. These women understood very well that the foundation of a thriving society lies in optimizing maternal and children's’ health and opportunities. If governments and policymakers genuinely put women and children first, the avoidable global high mortality rates could be reduced dramatically.
I have been very privileged in the last 40 years to visit all continents, lecturing about newborn health. If I had to pick one of the many things I learned during these travels, it is that all humans, of all cultural, political, or religious backgrounds, are unified in their wish to improve and secure the lives of their children. Parental love is the strongest of human bonds. If this could govern the world, the future for all of us would be very bright.
Every newborn count, and every newborn’s rights should be protected as per the UN Convention on the rights of a child, including their physical, mental, moral, spiritual, and social development. Every one of us has a role to play for us to reach this goal. As a pediatrician, I can contribute that the best possible health care is available to every child. As a professor, I can teach and promote research and improve practice. However, no single group or country can achieve this ambitious goal on its own. Everyone should be engaged in optimizing the lives of the children of the world. The best to start is at the beginning, i.e., start with newborns. We need to catalyze social and political will to bring this vision of the child's rights to fruition.
Some years ago, together with Joy Lawn, I tried to estimate the impact of some basic neonatal/infant therapies in terms of annual lives saved. The numbers are staggering and humbling, in equal measure, in terms of what we have achieved and how much more we could do.
Antenatal steroids 500,000
Resuscitation with air 550 000
Kangaroo mother care 450,000
Hypothermia therapy 40-80,000
Oral rehydration 2000,000
As can be seen, these therapies are highly cost-effective, and many of the interventions are inexpensive such as oral rehydration, resuscitation with air, and kangaroo mother care. However, in my opinion, every therapy needed for a newborn and child, anywhere in the world, should be free. Also, progress requires better awareness, commitment, and organization.
This is the responsibility of not just health care professionals or governments but all of society. That is why we are appealing to all of you to join the Global Newborn Society and through social movements, generate between newborn and child health in your communities.
The World Health Organization (WHO) informs us that in 2019 about 2.5 million out of approximately 130-140 million newborns died, giving average neonatal mortality of 17 per 1,000. Although down 52% from an average global rate of 38 deaths per 1,000 in 1990, still 6,700 newborns die every day. Also, we know a child born in sub-Saharan Africa or South Asia is 10 and 9 times respectively more likely to die in the first month of life than a child in a high-income country. Across countries, the risk of dying in the first month of life is, according to WHO, 55 times higher in the highest than in the lowest mortality country.
This huge gap is not acceptable. We know how to reduce it, and we know it is possible to do it. We should focus on the main causes of neonatal death: prematurity, asphyxia, and infections. All these conditions are, to a large degree, preventable. An important tool is to improve maternal health and wellbeing, and the education of girls is a very important part of this.
I have over the years worked and conducted projects in the most affluent as well as among the poorest countries in the world. I have most of my life worked in Norway but also in Sweden and the USA. In the last five years, I have been involved in a newborn project in Mali, West Africa. I have had the privilege to visit not only the best-equipped hospitals and neonatal units in the world but also healthcare settings in Southeast Asia and Sub-Saharan Africa where so much of basic health care is lacking. What is not lacking is the passion and hard work of health workers and traditional birth attendants in these settings. The dedication and love for children among healthcare professionals are the same. Our deep-seated love for children unifies humanity.
The newly founded Global Newborn Society will be an important tool to reach our goals: to save our newborn children, to give them a good and secure life because of every newborn count!
Ola Didrik Saugstad, MD, PhD, FRCPE
Professor of Pediatrics
University of Oslo, Norway
Adjunct Professor of Pediatrics
Ann & Robert H. Lurie
Children’s Hospital of Chicago
Department of Neonatology
Chicago, Illinois, USA
Honorary Professor of Pediatrics
Pirogov Russian National Research Medical University, Moscow, Russia