Jarvis – Our Miracle Baby By Kate Warner Coffs Harbour, Australia

I read a lot of stories about miracle babies during my pregnancy. Although they would inevitably make me cry, I found solace in hearing about other people's similar ups and downs. I hope my story will do the same for others. It's long because it was indeed an ongoing saga.

Our first son turned two and we decided it was time to make him a brother or sister. We managed to do this without much drama, much like the first time. At around 6 weeks I started bleeding. I spotted for a week or so with my first son so whilst it was a worry, we figured that was just how my body did pregnancy. A couple of weeks later the bleeding hadn't stopped and we started to investigate. An early ultrasound confirmed a viable pregnancy with an odd shaped sac, but no obvious reason for bleeding.

At 11 weeks we had another scan to see how things were traveling. We chose not to have the full screening tests for Down Syndrome at this point. During the ultrasound I noticed a 'wall' of something protruding into my womb, almost segmenting it into two halves. Our baby was up one end and the other, seemingly inaccessible part, was empty. I was told that everything was fine.

Only after a thorough read of the ultrasound report did I find out that I had a suspected 'uterine synechia' that ‘may be of no clinical significance'. My GP had never heard of this and referred me to an obstetrician but there was a waiting list. We were concerned and we needed to find out more, sooner rather than later. Pregnancy Care at the hospital would not see me any earlier and told me to wait until the usual first appointment at 19 weeks. They said if this ‘uterine synechia’ was urgent, it would have been flagged and someone would have called me. I now suspect they didn’t know what it was either.

We needed to get to the bottom of it. Had this thing caused the earlier bleeding? Should we be concerned about the pregnancy? Was our baby going to make it? No one seemed to know or care what this thing was. We were becoming very anxious at this point and there was no way we could get through the next 8 weeks without more information. We googled. And we didn’t like what we found. Our stress levels steadily increasing, I called the obstetrician for a priority appointment. I was told I’d have to wait until the scheduled appointment, which was about a month away. Now, I am not usually a particularly assertive person, but this is something I had to learn to be throughout this pregnancy. I drove straight to the obstetrician’s office and explained our situation to the receptionist face to face. I told her that not knowing what was going on was causing me a great deal of stress. She scheduled us in within the week. We don’t have health insurance and were worried about how we would afford the appointment, but our concern for our baby far outweighed this.

Thankfully, the obstetrician had seen uterine synechiae before and said we were right to push to see him sooner. He said the ultrasound report saying it ‘may be of no clinical significance' was a bit of an understatement. It seems uterine synechia are quite rare and not a lot is known about them. It is basically a fold of scar tissue that can present as a floppy 'shelf' or tight band of tissue across a portion/s of the womb. They are usually a result of some kind of procedure such as a dilatation and curettage or a c-section. I have only ever had a c-section. Apparently surgical technique has a bit to do with the likelihood of developing uterine synechiae. I had a registrar perform mine with my first son. We learned that some potential risks with uterine synechiae include: trouble with menstruation and conceiving – as high as 43% of women with this condition can not conceive (we were very lucky here); the baby can become entangled in the tissue; the tissue can obstruct the baby's growth in some way; the tissue may effect how the placenta imbeds and develops. We would need regular monitoring. Sure there was nothing we could do about it now, but at least we knew what we were dealing with. On top of the stress, I felt an overwhelming sense of anger that no one had told me about the risk of developing uterine synechiae when I had my first c-section. I was also extremely worried that my baby would be somehow comprised and I wouldn’t know it. It impacted how my husband and I connected with the pregnancy and each other.

At 20 weeks I went to the Pregnancy Care appointment and was met by a registrar who was way too excited about my rarity and launched into a long list of what could go wrong. He spoke of tissue acting as a tourniquet, babies born with missing digits, heads becoming entrapped and such. He called the hospital in the closest major city to find out if they recommended in utero surgery. This seemed absurd to me and certainly not consistent with my obstetrician’s recommendations. I held my tongue but left the appointment feeling completely gutted and all the worries I was carefully trying to manage were reignited. I was so frustrated that suddenly, 8 weeks after I had sought further advice and support, someone at Pregnancy Care was now super interested in my pregnancy. The registrar requested an ultrasound at 24 weeks to see how things were traveling. I burst into tears before I could make it out of the hospital.

Lo and behold! At 24 weeks, bubs didn’t seem to be measuring up. He was 2-3 weeks behind. His femur and abdomen were particularly small – below the 3rd centile. This brought his overall estimated weight down for his gestational age and triggered Pregnancy Care to make a referral to a major hospital 5 hours away for a more detailed scan. Not only could this be a sign of growth restriction, but it could also indicate other underlying conditions that we had not tested for. My obstetrician was keen for the specialist sonographer to complete a morphology scan to explore this. Whilst there, they confirmed that our baby was measuring very small for gestational age and we should have fortnightly growth scans. They said that even though the blood flow from the cord and placenta seemed fine, there appeared to be growth restriction. The baby moved a lot during my scan and this seemed to tweak their interest. I thought he was just a busy baby but I now know his hyperactivity may have been an indicator that his cord may have been compromised. This was not explored at the time. We asked if they were looking for soft indicators of chromosomal conditions but they didn’t because this wasn’t specifically requested on the referral. We couldn’t understand why they wouldn’t do this, especially since we’d traveled from a regional area. I was a mess when we left the hospital. It wasn’t bad news – it wasn’t any news. We didn’t feel like we’d gotten any answers, only more questions and uncertainties.

Back home, my obstetrician was baffled that the specialist sonographer didn’t look for soft indicators while we were there. He requested a morphology scan locally and we requested a Verifi blood test. A friend told us about this test that is sent to the US and is almost a 100% accurate testing for the 3 most common chromosomal conditions. It was expensive for us ($600) but we felt the red flag had been raised now and it was an opportunity to eliminate some uncertainty and possibly prepare ourselves. The results took 2 weeks and came back clear. The morphology scan didn’t show any concerns other than what we already knew – our baby was small overall with particularly short femurs and small abdomen.

By now, we were done with agonizing over millimetres of growth so we decided not to have the fortnightly scans. We wanted to try and enjoy the rest of the pregnancy. I continued to see my obstetrician fortnightly and he took a quick look via ultrasound at each appointment. I had some swelling and slightly high blood pressure toward the end but no other developments. We decided to have the baby via c-section at 38 weeks and 5 days, given he was so small and we weren’t sure how he would cope with a natural birth. We also wanted our obstetrician there and as a public patient, having a planned c-section was our best chance. Our obstetrician recommended I have two steroid shots to aid the baby’s lungs. I wasn’t 100% sure about this as I’d read there could be ongoing side effects for the baby, but this turned out to be wise advice.

On 7 November 2014 Jarvis was born via c-section. He was 2.2 kilos and 46cm long. He scored 9s for his Apgars, didn’t need any help breathing and took to feeding like the hungry little guy he was. To our surprise, the cord was wrapped around his neck twice and had a ‘true knot’ in it. Apparently true knots aren’t all that common. Also, the placenta was segmented and jagged – it didn’t look like a normal, healthy placenta. All those scans and tests hadn’t picked up any of this! Our baby was so small because he was basically on rations in there. He was emaciated and had no fat. He didn’t look like a premmie baby – he looked like a baby that should have been bigger but hadn’t reached his potential. He looked like a frail, cranky little bird. We were so relieved to have him out and thanked our lucky stars that we decided on a c-section. The knot in the cord, together with the loops around his neck, could have been disastrous if we’d tried to have him naturally. We’ve since learned that often with stillborn babies a true knot is the only indication of what went wrong.

Jarvis fed and slept a lot but was very alert when he was awake and he was surprisingly strong. He put on 250g his first week home. We found his size quite confronting at first (my first son was almost 4 kg when he was born), but we soon got used to special ordering premmie sized nappies and his 00000 clothes hanging off him. After having some time to process everything that happened, chat with my Child and Family Health Nurse and do my own research, I began to piece it all together. I truly believe that the uterine synechia had prevented the placenta from imbedding properly, compromising its function and creating the intra uterine growth restriction (IUGR). I have also since read that poorly functioning placentas can result in less warton’s jelly on the cord, which can increase the likelihood of a true knot. Smaller babies are also more likely to have true knots in their cord. No medical practitioner has given us a definitive answer as to what happened during my pregnancy. I feel like we never received any closure and I still struggle with this.

Against all these odds, Jarvis fought his way into the world and has barely looked back. We had some breastfeeding issues (not uncommon for IUGR babies) and his weight plateaued between 3 and 4 months, so we made the decision to switch to formula. He started to fatten up before our eyes. He was born well below the 3rd centile and is now on the 15th centile for length and weight. He is now 6 months old and cut his first tooth. He seems to be hitting all the usual milestones. Little is known about the impact of IUGR and true knots into childhood and adulthood. Apparently some people catch up in size and some don’t. Recent studies have shown a link between IUGR and metabolic disorders later in life, such as diabetes, as well as cardiovascular disease. There is also increased risk of muscle tone problems and learning difficulties, but it is too early to tell for Jarvis. We try not to think about this too much, but at the same time, we want to be on top of things early if he starts to lag developmentally. Personality wise, he has a lot of spunk! We believe he had to in order to survive. Interestingly, many people have also remarked about his particularly low tolerance for hunger, which is no surprise really. I’d be the same if I had starved for 9 months.

My husband and I are still recovering from our experience. I am receiving treatment for post traumatic stress and depression. I’m learning that a lot of my emotions about the pregnancy are centered around guilt, anger and not feeling heard. It will take me some time to work through this. Whether we’d be able to conceive again or not, I don’t feel like I could survive another pregnancy. I feel sad because something that should have been such a joy became a life altering, traumatic experience for us. All because of some scar tissue I didn’t know about.

As a result of my experience I believe woman should be better informed about ALL the risks associated with c-sections. They are an increasingly popular birthing choice and a decision that should be made with all the information available. Woman have a right to know that uterine synechiae can develop as a result of c-sections, which can not only impact your ability to conceive in the future but can also create various problems for subsequent pregnancies. Please – think twice about having a c-section, carefully consider all your options and if you do have this procedure, try to ensure that you have a highly skilled surgeon holding the scalpel.

International Ashermans Association

Conditions of third party use

Contents from this website may be reprinted only under the condition that the content is credited to International Ashermans Association and a URL link i.e.  http://www.ashermans.org/ 
is included.